AbledResearch-Diabetes-Stem-Cell-Breakthrough

POSTED ON October 10th  - POSTED IN AbledConditions, AbledHealth, AbledResearch, AbledWellness
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AbledResearch Post banner shows a close-up photo of someone holding a lancet in one hand just after pricking the forefinger of their other hand to be able to take a blood sugar reading from the drop of blood on that finger. The headline reads: Abled research: Diabetes breakthrough: 15 years of work pays off getting stem cells to produce insulin.
AbledResearch photo shows an image of highlighted cells in a mouse. The caption reads: Human stem cell-derived beta cell islet-like clusters are producing insulin in a mouse.

A Giant Leap Forward Towards A Cure For Diabetes

Researchers never want to jinx their work by using black and white terms like ‘cure’, but Harvard stem cell researchers are tantalizingly close to what amounts to a cure for Type 1 Diabetes.

For millions of diabetics around the world, this is the biggest hope yet that might bring an end to daily insulin injections, the thousands of times each year they have to prick their finger with a lancet to test their blood sugar levels, or having to wear external insulin pumps while also fearing the disease’s potential long-term side effects such as blindness, kidney disease, amputations, strokes and heart attacks.

Doug Melton, Harvard’s Xander University Professor and a Howard Hughes Medical Institute investigator who leads the team of researchers at the lab that bears his name, says  “we are now just one-pre-clinical step away from the finish line.” That’s about as close to saying ‘cure’ as you can get without actually saying it.

And he’s got two good reasons for not wanting to over-state the possible outcomes before the definitive conclusions are reached – he has two grown children with Type 1 diabetes. When his, then, infant son Sam was diagnosed 23 years ago, Professor Melton dedicated his career to finding a cure for the disease.

In work that has just been published in the journal Cell, the Melton lab researchers have, after 15 years of trying and failing and trying and failing, have finally made a giant leap forward in diabetes research by being able to use human embryonic stem cells to produce human insulin-producing beta cells equivalent in most every way to normally-functioning beta cells.

As Professor Melton told the Harvard Gazette“There have been previous reports of other labs deriving beta cell types from stem cells. No other group has produced mature beta cells as suitable for use in patients,” he said. “The biggest hurdle has been to get to glucose sensing, insulin-secreting beta cells, and that’s what our group has done.”

Part of that hurdle is being able to produce those beta cells in the massive quantities needed, not only for cell transplantation, but also for pharmaceutical purposes. In this research, some stem cells came from human embryos, but Professor Melton’s team was able to reprogram human skin cells into a stem-cell-like-state  – a technique that is obviously more ethically acceptable.

The challenge with Type 1 diabetes is that it’s a metabolic response in the body’s immune system that goes rogue and kills off all the beta cells in the pancreas that produce insulin. About 150 million beta cells are needed for transplantation into a single patient and the final pre-clinical step involves protecting those cells from the immune system by using an implantation device. The device Melton is collaborating on with Professor Daniel G. Anderson and his colleagues at MIT and the Koch Institute has, so far, protected beta cells implanted in mice from immune system attacks for many months while they continue to produce insulin.

The lab-grown cells, currently being tested in primates, are just one step – albeit a few years – away from being clinically-trialled in humans.

And what do the Melton offspring think of this? Their father who also is Co-Scientific Director of the Harvard Stem Cell Institute and the University’s Department of Stem Cell and Regenerative Biology  — both of which were created more than a decade after he began his quest — said that when he told his son and daughter, they were surprisingly calm. “I think like all kids, they always assumed that if I said I’d do this, I’d do it,” he said with a self-deprecating grin.

Others are more willing to make a big deal about this. Richard A. Insel, M.D., the Chief Scientific Officer at the Juvenile Diabetes Research Foundation (JDRF) which along with the Helmsley Charitable Trust has contributed funding, says“JDRF is thrilled with this advancement toward large-scale production of mature, functional human beta cells by Dr. Melton and his team.”

Elaine Fuchs,  the Rebecca C. Lancefield Professor at Rockefeller University, and a Howard Hughes Medical Institute investigator who is not involved in the work, hailed it as “one of the most important advances to date in the stem cell field.”

Jose Oberholzer, Associate Professor of Surgery, Endocrinology, and Diabetes, as well as Bioengineering, at the University of Illinois at Chicago, Director of the Islet and Pancreas Transplant Program and Chief of the Division of Transplantation, called the discovery bigger than the discovery of insulin and says the work “will leave a dent in the history of diabetes. Doug Melton has put in a lifetime of hard work in finding a way of generating human islet cells in vitro. He made it. This is a phenomenal accomplishment.”

Felicia W. Pagliuca, Jeff Millman and Mads Gurtler of the Melton Lab are co-first authors on the Cell paper.

Other funding for the research, for which Professor Melton and his colleagues are extremely grateful, came from the National Institutes of Health, The Harvard Stem Cell Institute, the JPB Foundation, and Howard and Stella Heffron.

Description of Video

The beginning shows a spinner flask containing red culture media and cells, the cells being too small to see. Inside the flask you can see a magnetic stir bar and the flask is being placed on top of a magnetic stirrer. 

This is followed by a time-lapse series of magnified images showing how cells start off as single cells and then grow very quickly into clusters over the next few days. The size of the clusters is the same as the size of human islets at the end.

The final image shows 6 flasks, enough for 6 patients, spinning away. If you look closely, you can see particles spinning around, the white dust or dots are clusters of cells, each containing about 1000 cells.

Credit: Mikey Segel

AbledResearch photo shows Harvard's Xander University Professor Doug Melton whose team has announced a major breakthrough in Diabetes Research.
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Transcript of NPR Report

Copyright ©2014 NPR. For personal, noncommercial use only. See Terms of Use. For other uses, prior permission required.

MELISSA BLOCK, HOST:

We’re going to turn now to health news of an advance that could eventually lead to a cure for diabetes. Before the discovery of insulin in the 1920s, diabetes was a feared disease that often led to a rapid death. Today, insulin injections to control blood sugar levels are a mainstay of therapy for Type 1 diabetes. They’re also used by many with the Type 2 form of the disease.

But insulin injections aren’t a cure. People can still suffer complications, including heart attacks and blindness. NPR’s Rob Stein reports on work by scientists at Harvard that could someday eliminate the need for injections.

ROB STEIN, BYLINE: For Harvard cell biologist Doug Melton, the search for something better than insulin shots for diabetes has been a very personal quest.

DOUG MELTON: My six-month-old son Sam came down with diabetes some 20 years ago. And some years later, my 14-year-old daughter Emma also came down with Type 1 diabetes. Since that time, I don’t know how to say it except that I’d do what any parent would do, is to say that I’m not going to put up with this. And I want to find a better way.

STEIN: Now, Melton and his colleagues are reporting in the journal Cell that they finally found that better way. They figured out how to mass-produce the kind of cells that naturally produce insulin in the body – cells that could be transplanted into patients so their bodies could control their blood sugar normally.

MELTON: We are reporting the ability to make hundreds of millions of cells – the cell that can read the amount of sugar in the blood which appears following a meal and then squirt out or secrete just the right amount of insulin.

STEIN: They did this using human embryonic stem cells. They can be turned into almost any kind of cell in the body. But for 15 years the researchers tried and failed and tried and failed to find just the right mix of chemical signals that would coax human embryonic stem cells into becoming insulin cells. Finally, they came up with a recipe that works.

MELTON: A short way of saying this might be like if you were going to make a very fancy kind of new cake – like I do know, a raspberry chocolate cake with vanilla frosting or something. You pretty much know all the components you have to add. But it’s the way you add them and the order and the timing, how long you cook it, et cetera. The solution to that just took a very long time.

STEIN: And when Melton and his colleagues transplanted the cells into mice with diabetes, the results were clear and fast.

MELTON: We can cure their diabetes right away in less than 10 days. This finding provides the kind of unprecedented cell source that could be used for cell transplantation therapy in diabetes.

STEIN: Other scientists are hailing the research as a big advance.

MELTON: Well, it’s a huge landmark paper. I would say it’s bigger than the discovery of insulin.

STEIN: Jose Olberholzer is a professor of bioengineering at the University of Illinois.

JOSE OLBERHOLZER: The discovery of insulin is important and certainly saved millions of people. But it just allowed patients to survive but not really to have a normal life. The finding of Doug Melton would really allow to offer them really something that I would call a functional cure, you know. They wouldn’t really feel any more being diabetic if they got a transplant of these kinds of cell.

STEIN: Now, Melton and others caution there’s still a lot more work to do before they’re ready to try this in people with diabetes. For one thing, they need to come up with a way to hide the cells from the immune system, especially for people with Type 1 diabetes, so the immune system doesn’t attack and destroy the cell. Melton and his colleagues are working on that. And they think they may have come up with a solution – a kind of protective shell.

MELTON: We’re thinking about it as sort of like a teabag were the tea stays inside, the water goes and then the dissolved tea comes out.

STEIN: And so if you think about a teabag analogy, we would put ourselves inside this teabag.

STEIN: But that’s not the only problem. Some people have moral objections to anything that involves human embryonic stem cell research because it destroys human embryos. Daniel Sulmasy, a doctor and bioethicist at the University of Chicago shares that view.

DANIEL SULMASY: If, like me, someone considers the human embryo to be imbued with the same sorts of dignity that the rest of us have, then in fact this is morally problematic. It’s the destruction of an individual unique human life for the sole purpose of helping other persons.

STEIN: Melton says he’s also found a way to use another kind of stem cell – cells that don’t destroy any embryos. He’s trying to figure out if they work as well and hopes to start testing his insulin cells in people with diabetes within three years. Rob Stein, NPR News.

Copyright © 2014 NPR. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to NPR. This transcript is provided for personal, noncommercial use only, pursuant to our Terms of Use. Any other use requires NPR’s prior permission. Visit our permissions page for further information.

NPR transcripts are created on a rush deadline by a contractor for NPR, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of NPR’s programming is the audio.

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Previous Breakthrough Discovery About New Hormone To Treat Type 2 Diabetes

In 2013, HSCI Co-Director Doug Melton and postdoctoral fellow Peng Yi discovered a hormone that holds promise for a dramatically more effective treatment for type 2 diabetes. The researchers believe that the hormone might also have a role in treating type 1, or juvenile, diabetes.

Harnessing The Potential Of Stem Cells

HSCI Co-Director Doug Melton speaks at TEDxBeaconStreet in 2013 about the potential of stem cell biology for regenerative medicine, with a focus on finding new treatments for diseases such as diabetes.

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AbledConditions-Alzheimers Disease-UCLA Treatment Improves Memory

POSTED ON October 8th  - POSTED IN AbledConditions
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Improvements Allowed Some Patients To Return To Work

 

A multi-discipline lifestyle intervention study at the University of California Los Angeles (UCLA) has produced some breakthrough results in slowing or reversing memory loss in patients with Alzheimer’s Disease.

While it’s a small study, the implications could be huge. The findings come from a joint effort between UCLA’s Mary S. Easton Center for Alzheimer’s Disease Research and the Buck Institute for Research on Aging.

The team implemented a 36-point lifestyle overhaul program that included dietary changes, use of specific supplements and medications, optimal sleep and increased brain stimulation. The results were so positive nine out of 10 patients showed remarkable memory improvements, and six patients were able to either return to work or demonstration significant performance improvements in their jobs.

The author of the resulting paper on the study, Dale Bredesen, Augustus Rose Professor of Neurology, Director of the Easton Center at UCLA, and Professor at Buck Institute says that current medications for Alzheimer’s aren’t working. “The existing Alzheimer’s drugs affect a single target, but Alzheimer’s disease is more complex. Imagine having a roof with 36 holes in it, and your drug patched one hole very well – the drug may have worked, a single “hole” may have been fixed, but you still have 35 other leaks, and so the underlying process may not be affected much.”

“It is noteworthy that the major side-effects of this therapeutic system are improved health and an improved body mass index, a stark contrast to the side effects of many drugs.”

While he admits the findings are anecdotal and the study group small, Professor Bredesen is optimistic, saying, “the current anecdotal results require a larger trial, not only to confirm or refute the results reported here, but also to address key questions raised, such as the degree of improvement that can be achieved routinely, [and] how late in the course of cognitive decline reversal can be effected.”

That last one is an important point. The one patient who did not show any improvement had been diagnosed with late-stage Alzheimer’s Disease.

Professor Bredesen also wants to find out whether this multi-faceted approach can be effective in patients with early onset Familial Alzheimer’s Disease (eFAD), which can develop in people as young as 30,  and he and his team are curious to know how long the improvements that have been shown in this study can be sustained.

You can read the full study published in the online edition of Aging.

Mary S. Easton Center for Alzheimer’s Disease Research is part of the UCLA Department of Neurology which encompasses more than 26 disease-related research programs. This includes all of the major categories of neurological diseases and methods, encompassing neurogenetics and neuroimaging as well as health services research. The 140 faculty members of the Department are distinguished scientists and clinicians who have been ranked #1 in NIH funding for 9 consecutive years beginning in 2002. The Department is dedicated to understanding the human nervous system and improving the lives of people with neurological diseases, focusing on three key areas: patient/clinical care, research, and education. For more information, see http://www.neurology.ucla.edu/

The Buck Institute is the U.S.’s first independent research organization devoted to Geroscience – focused on the connection between normal aging and chronic disease. Based in Novato, CA, The Buck is dedicated to extending “Healthspan”, the healthy years of human life and does so utilizing a unique interdisciplinary approach involving laboratories studying the mechanisms of aging and those focused on specific diseases. Buck scientists strive to discover new ways of detecting, preventing and treating age-related diseases such as Alzheimer’s and Parkinson’s, cancer, cardiovascular disease, macular degeneration, osteoporosis, diabetes and stroke.  In their collaborative research, they are supported by the most recent developments in genomics, proteomics, bioinformatics and stem cell technologies. read more about this study at the Buck Institute for Research on Aging.

One Patient’s Treatment Regimen

Professor Bredesen’s approach is personalized to the patient, based on extensive testing to determine what is affecting the plasticity signaling network of the brain.

As one example, in the case of the patient with the demanding job who was forgetting her way home, her therapeutic program consisted of some, but not all of the components involved with Bredesen’s therapeutic program, and included:

(1) Eliminating all simple carbohydrates, leading to a weight loss of 20 pounds;

(2) Eliminating gluten and processed food from her diet, with increased vegetables, fruits, and non-farmed fish;

(3) To reduce stress, she began yoga;

(4) As a second measure to reduce the stress of her job, she began to meditate for 20 minutes twice per day;

(5) She took melatonin each night;

(6) She increased her sleep from 4-5 hours per night to 7-8 hours per night;

(7) She took methylcobalamin each day;

(8) She took vitamin D3 each day;

(9) Fish oil each day;

(10) CoQ10 each day;

(11) She optimized her oral hygiene using an electric flosser and electric toothbrush;

(12) Following discussion with her primary care provider, she reinstated hormone replacement therapy that had been discontinued;

(13) She fasted for a minimum of 12 hours between dinner and breakfast, and for a minimum of three hours between dinner and bedtime;

(14) She exercised for a minimum of 30 minutes, 4-6 days per week.

The results for nine of the 10 patients reported in the paper suggest that memory loss may be reversed, and improvement sustained with this therapeutic program, said Bredesen. “This is the first successful demonstration,” he noted, but he cautioned that the results are anecdotal, and therefore a more extensive, controlled clinical trial is needed.

Experts Caution More Study Is Needed

“It’s way too early to draw any conclusions from this,” said Heather Snyder, director of medical and scientific operations for the Alzheimer’s Association in Chicago. “It raises a lot of questions that should be explored in larger studies.”

Dr. James Galvin, a professor of neurology at NYU Langone Medical Center in New York City, echoed that sentiment.

“I’m not knocking the concept,” Galvin said. The factors the program targets — including diet, physical activity and chronic body-wide inflammation — are scientifically valid, he said.

But, Galvin added, it’s hard to evaluate the specific therapies, particularly the supplements, based only on these case reports.

“There’s not enough here to understand why these things were chosen, or how the doses were chosen,” Galvin said.

The supplements included curcumin, vitamins B12 and D3, fish oilcoconut oil, resveratrol, coenzyme Q10 and ashwagandha — a herb used in traditional Indian medicine.

(Source: HealthDay)

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AbledKids Sesame Street Emergency Kit

POSTED ON October 7th  - POSTED IN AbledKids
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When Disaster Strikes, Kids Can Turn To Elmo

Breaking News on TV seems to follow an annual cycle of seasonally-associated natural disasters that can stem from hurricanes, tornadoes, blizzards, flooding and more. Not to mention, unexpected disasters such as earthquakes, terrorist  attacks, viral outbreaks like Ebola and a host of other threats.

As frightening as these events can be for grown-ups, they’re even more terrifying for children, and a lot of parents get bombarded with questions, or try to ignore that these threats exist so as not to upset their kids.

In fact, the folks at Sesame Workshop, the collective non-profit behind Sesame Street, has found that the latter may be the truest gauge of how ill-prepared most families are to deal with unexpected emergencies. They cite a recent study that shows 60 percent of families don’t have an emergency plan.

To help remedy this, Sesame Workshop has partnered with PSEG (the Public Service Enterprise Group) to produce two smartphone and tablet apps called ‘Let’s Get Ready‘ and ‘Here For Each Other’.  The first teaches kids what they should now if an emergency strikes, such as the names of their parents and where they live. The second teaches parents how to talk with their kids about disaster situations  and answer questions that could come up in the middle of an emergency.

PSEG’s President and Chief Operating Officer, Ralph LaRossa says partnering with Sesame Workshop is a natural extension of  PSEG values in educating people on how to be prepared in unexpected situations. As he puts it, “Utility folks will keep the lights on, we’ll keep the house warm, but it’s really all about communicating with children and their families and that’s what Sesame Street means for us.”

Sesame Workshop’s Senior Vice-President of Community and Family Engagement, Jeanette Betancourt, says, “When we start these planning moments and learning this critical information early on, it becomes part of children’s resiliency to growing up kinder, smarter and stronger. It really is valuable to start early, not only as a child, but as an entire family”.

You can click on the names of ‘Let’s Get Ready‘  (en Español) and ‘Here For Each Other‘ (en Español) to find them online as part of  the Toolkits section of Sesame Street’s website. You can find the ‘Let’s Get Ready’ app at iTunes  for the iOS version, and at Google Play for the Android version.

Sesame Workshop has also crafted other Toolkits to help families and children cope other issues like Divorce or when someone in a family has been jailed , is diagnosed with a serious illness, or has died. They’ve even prepared a toolkit for the unique issues military families face.

(Sources: Sesame Workshop | NBCNews)

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AbledWarriors-American-Veterans-Disabled-For-Life-Memorial

POSTED ON October 6th  - POSTED IN AbledPeople, AbledWarriors
AbledWarriors banner shows a disabled veteran with an amputated leg standing with a crutch while saluting against the backdrop of the curve of the Earth seen from space with a sunrise glowing around the veterans silhouette and a global map showing as a partially dissolved backdrop.
Abled Warriors post banner shows sketches of the American Veterans Disabled For Life Memorial dedicated on October 5, 2014 in Washington, D.C. A stone wall bears the name of the inscribed into it in the background while we see two men observing an eternal flame in the granite star centerpiece of the memorial while we see the left profile of an Armed Forces officer and another man in the center foreground looking off to the left. Someone in a wheelchair is sitting further to the left, looking at the reflecting pool. The headline reads: AbledWarriors: American Veterans Disabled For Life Memorial: The Dedication.

THE MEMORIAL

Photo from the Disabled Veteran's Life Memorial Foundation, Inc. shows an area view of the site for the American veterans Disabled For Life memorial in Washington, D.C. The United States Capitol building is seen in the background.

Through the juxtaposition of granite and glass, The American Veterans Disabled for Life Memorial conveys a combination of strength and vulnerability, loss and renewal.

At this sacred spot, all of us—sons and daughters, mothers and fathers, wives, husbands and friends—have the opportunity to learn the important lessons of courage, sacrifice, tenacity, loyalty and honor by bearing witness to the experiences of our heroes who are disabled.

The focal point of the Memorial is a star-shaped fountain, its surface broken only by a single ceremonial flame. A grove of trees stands sentry beside the reflecting pool, signifying the persistence of hope.

Dedicated to both the living and the deceased—a setting for coming together or quiet meditation—the Memorial holds a special place in the hearts of all Americans, and serves as a never-ending reminder to all of the cost of human conflict.

(Source: The American Veterans Disabled For Life Memorial)

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THE HISTORY

17 Years In The Making

 

AbledWarriors photo shows philanthropist Lois Pope with Former U.S. Secretary of Veterans Affairs, the late Jesse Brown.

 

It all began in 1997. Lois Pope, a prominent philanthropist with a strong interest in veterans’ causes, contacted Jesse Brown, then Secretary of Veterans Affairs in the Clinton Administration. In turn, Jesse put Lois in touch with Art Wilson, National Adjutant of the Disabled American Veterans.  Lois indicated that she wanted to sit down with Art to discuss the many issues facing disabled veterans and their families.  During their initial meeting, Lois mentioned that she had noticed all the different memorials around the city.  She then asked Art the question that became the inspiration: “Where is it in Washington D.C. that we honor disabled veterans with a memorial?” Art’s answer: “There isn’t one.” Lois’ response: “We need to change that.”

Several months later Jesse, Art and Lois met together to discuss the idea of honoring disabled veterans with a memorial in Washington, D.C. This memorial would be designed to pay tribute to all disabled veterans, past, present and future, who have served or will serve in our nation’s military forces.  Knowing they would need authorization from Congress in order to build a memorial, they formed a 501(c) (3) nonprofit organization, and The Disabled Veterans’ Life Memorial Foundation, Inc. was born. The initial volunteer Board of Directors of the Foundation included Lois Pope, Chairman, and  Art Wilson, President,  and two additional volunteer members who were brought aboard for their tireless advocacy and leadership on veteran issues: from California, Ken Musselmann, Director; and from South Dakota, Gene Murphy, Treasurer. Secretary Jesse Brown was the Foundation’s first Executive Director.

All memorials in Washington are subject to the rigid standards of the U.S. Commemorative Works Act [40 USC Chapter 89 – National Capital Memorials and Commemorative Works]. Because the Act limits commemorative works honoring “… individuals or groups of individuals … until after the 25th anniversary of the death of the last surviving member of the group,” this Memorial, which specifically included living disabled veterans, required a special amendment to the Act.  The Act proscribes a rigorous process – “24 Steps for Establishing a Memorial in the Nation’s Capital” – which begins with authorization by the U.S. Congress.

After establishing the Foundation, Lois, Art and Jesse worked together to draft legislation to present before Congress. The final draft was introduced to Congress in October of 1998, and co-sponsored by Senators John McCain (AZ) and Max Cleland (GA), and Representatives Sam Johnson (TX) and John Murtha (PA). It requested that Congress “authorize the DVLMF to establish a memorial on Federal lands in the District of Columbia or its environs to honor veterans who became disabled while serving in the U.S. armed forces.”  Lois, Art and Jesse made numerous trips to Capitol Hill to promote the Memorial mission with legislators, and everyone they met with had the same response: they embraced the idea and were committed to getting it moved through committee and approved. Finally, on October 24, 2000, it was signed into law by President Clinton and became Public Law 106-348.

With the law in place, the Foundation focused on the vital challenges of the “24 Step” process:

  Create broad public awareness of the Memorial and its mission;

  Develop fundraising programs to secure the necessary financial support from individuals, corporations and organizations (Public Law 106-348 specifically stated that no Federal funds would be provided for the Memorial);

  Select a site for the Memorial;

  Convene a Design Competition and select the Memorial designer.

Over the ensuing years, the Foundation successfully executed each of the “24 Steps” leading to the planned dedication of The American Veterans Disabled for Life Memorial in October 2014. After dedication, the Memorial will be transferred to the National Park Service with its mission fulfilled.

 

(Source: The American Veterans Disabled For Life Memorial)

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THE DESIGN


AbledWarriors photo shows one of the early ink pen sketches of the design concept for the American Veterans Disabled For Life Memorial designed by Michael Vergason of Michael Vergason Landscape Architects. It shows part of the outside wall and the ceremonial flame in the center of the granite star.

It’s not very often that an architect has the opportunity to leave a lasting legacy in a prominent, public setting. But that is precisely what happened to Michael Vergason, of Michael Vergason Landscape Architects, based in Alexandria, Virginia.

On Veterans Day in 2002, the Disabled Veterans’ Life Memorial Foundation launched a design competition for The American Veterans Disabled for Life Memorial. Twenty renowned architecture and landscape architecture firms were invited to participate. Michael Vergason Landscape Architects was selected the following July, based on the design concept that is now coming to life within sight of the U.S. Capitol.

Vergason, whose work can also be seen at the National Cathedral, the U.S. Supreme Court, Monticello, the U.S. Cemetery at Omaha Beach in Normandy, France, and his alma mater, the University of Virginia, envisioned a hallowed place amid the bustle of the surrounding Washington streets. His design was meant expressly for its audience – disabled veterans, their loved ones and caretakers – who would now have a place for commemoration and quiet reflection within a grove of trees framed by granite and glass walls, punctuated by a ceremonial flame and a reflecting pool.

This approach to design is a hallmark of Vergason’s firm. Every project is process driven, beautifully detailed and seamlessly integrated into existing conditions, deriving inspiration from the uniqueness of a place and defining the salient characteristics throughout the seasons. Founded on the belief that landscape is a poetic, humanizing discipline responding to the fundamental human need for connection to the surrounding world, Michael Vergason Landscape Architects designs lasting places through the creative and rigorous study of the site and its context.

Given this guiding philosophy, the Memorial’s physical and symbolic centerpiece is a star-shaped fountain, embedded into a broad reflecting pool. Used throughout American history to honor, recognize, reward and represent our highest aspirations, this strong focal point structures the site. At its center, the ceremonial flame – the fire – embodies the elemental forces of injury, loss and renewal, and emerges from the water as a reminder of the hope that springs from perseverance in the face of adversity.

And then, standing sentry-like alongside the reflecting pool, are a grove of trees to provide dappled shade and comfort along the Memorial’s main paths. These paths are lined by the glass and granite walls of Vergason’s design, each representing the strength and fragility of the human spirit.

Experienced all together, these elements create a unique and respectful setting to reflect on – and honor – the great sacrifices of America’s disabled veterans…yesterday, today and tomorrow.

Read more about the design elements at the following links:

ARCHITECTURE
ENGINEERING
INTERPRETIVE CONTENT
GLASS PANELS
BRONZE SCULPTURES
REFLECTING POOL
CEREMONIAL FLAME
LANDSCAPING
STONE INSCRIPTIONS
PROFILES

 

(Source: The American Veterans Disabled For Life Memorial)

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THE MEANING

The American Veterans Disabled For Life Memorial will mean many things for many people, especially the individuals personally touched by disability, their comrades and their families and friends.

These short summaries are excerpted from longer recollections by three members of the Board of Directors of the Disabled Veteran’s Life Memorial Foundation, Inc. You can read their full essays by clicking on this link.

 

Dennis Joyner – Secretary | US Army, 9th Infantry Division, Bronze Star and Purple Heart

Mr. Joyner served in the U.S. Army, 9th Infantry Division, in Vietnam. While on patrol in June 1969 in Vietnam’s Mekong Delta, he became a triple amputee due to a land mine explosion.

What the Memorial Means to Me

Finally, a Memorial that will recognize and remember the lives of pain and suffering that I and my fellow disabled veterans have had to endure.  A Memorial that stands to honor the sacrifices forced upon my parents, my wife and my children.  A Memorial that will remove those haunting words I relive every day that I screamed on the jungle floor of the Mekong Delta in South Vietnam, “Let Me Die,” as I visualized the loss of both my legs and my arm.  Finally, a sense of satisfaction knowing what I gave, and my family and I continue to give, will be forever remembered.

REMEMBER….the sound of my cries and visualize the loss of both of my legs and my arm as I lay wounded on the jungle floor in South Vietnam.

REMEMBER….the sound of my mother and father’s hesitant footsteps on the wooden floor of the Army Hospital the first time they came to visit me.

REMEMBER….the pain and suffering that I and so many other disabled veterans endure for our FREEDOM.

REMEMBER….as you stand view the American Veterans Disabled For Life Memorial, we did it for you.

Finally, a Memorial that provides me a place to reflect back on my life as a disabled veteran.

Hearing my mother so often talk about the fear she had within as she walked through the hall of Valley Forge Army Hospital on her way to see me for that first time after losing my legs and arm. Being told how my father angrily responded that I would be fine after a friend told him it was a shame what happened to me.  And after being excited to receive artificial legs at age 21, only to later realize I would be more mobile living my life in a wheelchair.  And what did my adult son mean when he told my wife to keep an eye on our daughter because being my father’s child is not easy?

Yes, this is my Memorial for me to reflect and remember my life as one who gave three limbs defending the freedoms we so dearly cherish and for all those who live it with me.

It is a Memorial that will provide those whose lives haven’t been affected by the ongoing consequences war causes to understand that war, for some, lasts a lifetime.

Click here to read Mr. Joyner’s full essay

 

Diane Musselmann – Director | Widow of Kenneth G. Musselman – Director, U.S. Army, Co. B 46th Infantry, 198th Light Infantry Brigade, Americal Division, and received both the Bronze Star and Purple Heart.

Kenneth Musselmann served with the U.S. Army Americal Division in Vietnam where a land mine explosion and gunshot wounds resulted in the amputation of both his legs.

What the Memorial Means to Me

This Memorial means reaching a dream of Kenny’s.  It means remembering all the sacrifices that so many have made and have gone unnoticed by our country.  Soldiers are injured and life goes on, except, life is never the same.  Whether you can see someone’s disability or not, the pain never leaves.  The day the Memorial is dedicated, my family and I will be there to represent Kenny and stand for him.  I know he will be standing proud, too.

Click here to read Mrs. Musselmann’s full essay

 

Roberto “Bobby” Barrera – Director |  U.S. Marine Corps, Purple Heart Medal, National Defense Service Medal, Vietnam Service Medal, the Vietnam Campaign Medal and Combat Action Ribbon.

Mr. Barrera enlisted in the U.S. Marine Corps in February 1969 and while serving in Vietnam, he was seriously burned when enemy forces exploded a 500-pound land mine beneath his armored personnel carrier.

What the Memorial Means to Me

The Memorial is a direct reflection of my journey of the last forty-four years.  Initially, I asked a question common to many disabled veterans, “Why me God?”  I experienced a lot of anger at not having an answer to that question.  I suffered.  My family suffered.  I needed some purpose as to my existence.  Through love and compassion my anger was transformed into hope.  That hope became a spirit of service.  Through service to others I found my purpose in life.  This Memorial is my country’s gift to me, a gift of that same love and compassion that nurtured me and carried me during the darkest period of my life.  This Memorial is a reflection of who I am today.  It is a Memorial of healing.  It is a Memorial of hope.  It is a Memorial of service, a Memorial of my service to my country.

Click here to read Mr. Barrera’s full essay

AbledPeople link banner shows a photo of philanthropist Lois Pope standing with her hands behind her backs she stands between the reflecting pool and a glass panel that features a photograph of a soldier and a quotation at the new American Veterans Disabled For Life Memorial in Washington , D.C. The headline reads: AbledPeople: Lois Pope: A 16 year quest to honor disabled veterans and a champion of 'Life' at 81. Click here to go to the post.
AbledWarriors photo shows a wide shot of the invited audience looking across the star-shaped fountain at the VIP stage where Lois Pope and Art Wilson and other members of their Foundation listen to President Obama's remarks at the dedication of the American Veterans Disabled For Life Memorial in Washington DC.

The ‘Force Majeure’ Behind The Memorial

There are two chance encounters that planted the seeds of what later germinated into the inspiration for The American Veterans Disabled For Life Memorial.

The first occurred in the 1960’s when Lois Pope, a former Broadway singer and TV Commercial model, visited injured Vietnam War veterans recovering at a hospital in New York, and when she reached out to take the hand of a wounded soldier as she sang ‘Somewhere‘ from ‘West Side Story‘, she discovered he didn’t have one. It was a stark, shocking moment that brought home the horrors of war to a young woman who described herself as ‘naive’ and ‘clueless’ up ’til then.

The second occurred many years later as Lois Pope visited the Vietnam War Memorial in Washington, D.C., when she observed a disabled veteran in a wheelchair. She asked a park ranger where the memorial for disabled veterans was. “There isn’t one”, he answered.

Those two chance encounters combined to set in motion what would become a 16 year journey to make the Memorial a reality.  Mrs. Pope and her Foundations, established from her inheritance after the death of her husband Generoso Pope, Jr., the founder of the National Enquirer,  contributed over $10 million to the project and helped to raise another $80 million to underwrite the costs of getting legislation approved, and then designing and constructing the Memorial.

These many years later, her determination culminates in today’s dedication and she hopes the Memorial provokes “thinking and thanking” and that its location, close to the Capitol Building, makes lawmakers “think twice” about the human cost of war.

Read more about this dynamic 81 year-old’s zest for life and her other philanthropic efforts at The Lois Pope Life Foundation and soon in our upcoming AbledPeople profile of Lois Pope.

President Barack Obama, left, is presented a plaque by philanthropist Lois Pope, right, and Secretary of the Interior Sally Jewell, during the American Veterans Disabled for Life Memorial dedication ceremony in Washington, Sunday, Oct. 5, 2014. President Obama paid tribute to disabled U.S. veterans on Sunday, pointing to the dedication of a new memorial honoring those severely injured in war as a symbol of the nation's perseverance and character. (AP Photo/Manuel Balce Ceneta)

President Barack Obama, left, is presented a plaque by philanthropist Lois Pope, right, and Secretary of the Interior Sally Jewell, during the American Veterans Disabled for Life Memorial dedication ceremony in Washington, Sunday, Oct. 5, 2014.

President Obama paid tribute to disabled U.S. veterans on Sunday, pointing to the dedication of a new memorial honoring those severely injured in war as a symbol of the nation’s perseverance and character.

(Photo:wwlp.com/AP/Manuel Balce Ceneta)

Lois Pope addresses the 2014 Disabled American Veterans & DAV Auxiliary National Convention

AbledWarriors banner reads: The Dedication Ceremony

President Obama Dedicates New Memorial To Disabled Veterans

(WASHINGTON) U.S. President Barack Obama paid tribute to disabled American veterans, living and deceased, from all conflicts as he participated in the dedication of The American Veterans Disabled For Life Memorial in Washington, D.C. .

“America . . .”, he told the audience of over 3,000 people – many of them wounded and disabled veterans, “if you want to know what real strength is, if you want to see the character of our country, a country that never quits, look at these men and women.”

The President said the memorial would commemorate two centuries of Americans who have stepped forward to serve, leaving loved ones behind, and who returned home forever altered by war.

Mr. Obama said, “This memorial is a challenge to all of us, a reminder of the obligations this country is under. If we are to truly honor these veterans we must heed the voices that speak to us here. Let’s never rush into war, because it is America’s sons and daughters who bear the scars of war for the rest of their lives. “Let us only send them into harm’s way when it’s absolutely necessary.”

The dedication, Sunday, October 5th, was the culmination of 16 years of lobbying, fundraising and bureaucratic maneuvering by philanthropist Lois Pope, the late former Secretary of Veterans Affairs Jesse Brown and former CEO and national adjutant of the Disabled American Veterans organization Art Wilson. Mrs. Pope contributed $10 million of the more than $80 million raised  and started a Foundation to shepherd the Memorial through the daunting evolution from an idea to a U.S. law enacted by Congress and signed into law by President Bill Clinton, and, ultimately, the finished site comprised of stone, glass, bronze, symbolic trees and a granite star- shaped fountain with a ceremonial flame and reflecting pool.

It is located behind the U.S. Botanic Garden near the Rayburn House Office Building with a kitty corner view to the U.S. Capitol Building as seen in the following watercolor rendering by the firm of Michael Vergason Landscape Architects in Alexandria, Virginia, which submitted the chosen design.

AbledWarriors photo shows a watercolor rendering by Michael Vergason Landscape Architects of their design for The American veterans Disabled For Life Memorial in Washington, D.C. The watercolor is done as an aerial view of the site with the U.S. Capitol building in the distance in the top right corner. The site is a rectangular space with a fountain in the shape of a granite star and a reflecting pool bordered on one side by stone walls with various inscriptions and etched glass panels with bronze sculptures surrounded by a grove of trees.

Disabled Veterans Advocate, Actor Gary Sinise Speaks At Memorial

(WASHINGTON) You may know him best for his indelible portrayal of disabled veteran Lt. Dan Taylor in the 1994 movie Forrest Gump, but in real life, actor Gary Sinise has used that ‘claim to fame’ as a springboard to be an outspoken advocate of veterans’ issues.

In his most recent role as National Spokesman for The American Veterans Disabled For Life Memorial, he has traveled from coast to coast across the United States raising awareness about the Memorial and helping to raise funds.

Today, Sunday, October 5, 2014, his efforts, and those of the Board of Directors of the Disabled Veterans’ Life Memorial Foundation saw the fruition of their efforts at the dedication of the Memorial.

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AbledWarriors Photo shows a photograph of two of the panels from the American Veterans Disabled For Life Memorial in Washington, D.C. . A photo of a soldier comforting a wounded comrade is etched into the glass while a braze sculpture outline of a solider in full battle gear walking in a crouched position is seen in the background.
bledWarriors-Photo-President-Obama-Speaks-During-Dedication-of-The-American-Veterans-Disabled-For-Life-Memorial-
AbledWarriors-Photo-Invites guests and veterans are seen behind a flame from a pool as they listen to President Barack Obama speak at the American Veterans Disabled for Life Memorial dedication ceremony in Washington, Sunday, Oct. 5, 2014.
AbledWarriors Photo: Watercolor rendering of an aerial view of the American Veterans Disabled For Life Memorial
AbledWarriors Photo: Aerial view of the American Veterans Disabled For Life Memorial
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THE HISTORY OF THE MEMORIAL

This video was produced as an overview of the 16 year journey to bring the tribute to fruition, and, as an invitation to the official dedication ceremony of October, 5, 2014.

AMERICAN VETERANS DISABLED FOR LIFE MEMORIAL 

This video was produced to raise awareness about the proposed Memorial and to solicit donations to help with the funding of it.

GARY SINISE CHAMPIONS THE MEMORIAL ON ‘FACE THE NATION’ 

This video was produced in August as actor Gary Sinise, the official spokesman of the American Veterans Disabled For Life Memorial is interviewed for the CBS program ‘Face The Nation’.

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AbledTeens-Max-Lamm

POSTED ON September 25th  - POSTED IN AbledTeens
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Retinoblastoma is an eye cancer that begins in the retina — the sensitive lining on the inside of your eye. Retinoblastoma most commonly affects young children, but can rarely occur in adults.

Your retina is made up of nerve tissue that senses light as it comes through the front of your eye. The retina sends signals through your optic nerve to your brain, where these signals are interpreted as images.

A rare form of eye cancer, retinoblastoma is the most common form of cancer affecting the eye in children. Retinoblastoma may occur in one or both eyes.

(Source: Mayo Clinic)

Signs of retinoblastoma include:

  • A white color in the center circle of the eye (pupil) when light is shone in the eye, such as when taking a flash photograph
  • Eyes that appear to be looking in different directions
  • Eye redness
  • Eye swelling

When to see a doctor

Make an appointment with your child’s doctor if you notice any changes to your child’s eyes that concern you. Retinoblastoma is a rare cancer, so your child’s doctor may explore other more common eye conditions first.

If you have a family history of retinoblastoma, ask your pediatrician when your child should begin regular eye exams to screen for retinoblastoma.

(Source: Mayo Clinic)

Retinoblastoma occurs when nerve cells in the retina develop genetic mutations. These mutations cause the cells to continue growing and multiplying when healthy cells would die. This accumulating mass of cells forms a tumor. Retinoblastoma cells can invade further into the eye and nearby structures. Retinoblastoma can also spread (metastasize) to other areas of the body, including the brain and spine.

In the majority of cases, it’s not clear what causes the genetic mutations that lead to retinoblastoma. However, it’s possible for children to inherit a genetic mutation from their parents.

Retinoblastoma that is inherited

Gene mutations that increase the risk of retinoblastoma and other cancers can be passed from parents to children. Hereditary retinoblastoma is passed from parents to children in an autosomal dominant pattern, which means only one parent needs a single copy of the mutated gene to pass the increased risk of retinoblastoma on to the children. If one parent carries a mutated gene, each child has a 50 percent chance of inheriting that gene.

Although a genetic mutation increases a child’s risk of retinoblastoma, it doesn’t mean that cancer is inevitable.

Children with the inherited form of retinoblastoma tend to develop the disease at an earlier age. Hereditary retinoblastoma also tends to occur in both eyes, as opposed to just one eye.

(Source: Mayo Clinic)

What treatments are best for your child’s retinoblastoma depends on the size and location of the tumor, whether cancer has spread to areas other than the eye, your child’s overall health and your own preferences. When possible, your child’s doctor will work to preserve your child’s vision.

Chemotherapy

Chemotherapy is a drug treatment that uses chemicals to kill cancer cells. Chemotherapy can be taken in pill form, or it can be given through a blood vessel. Chemotherapy drugs travel throughout the body to kill cancer cells.

In children with retinoblastoma, chemotherapy may help shrink a tumor so another treatment, such as radiation therapy, cryotherapy, thermotherapy or laser therapy, may be used to treat the remaining cancer cells. This may improve the chances that your child won’t need surgery.

Chemotherapy may also be used to treat retinoblastoma that has spread to tissues outside the eyeball or to other areas of the body.

Radiation therapy

Radiation therapy uses high-energy beams, such as X-rays, to kill cancer cells. Two types of radiation therapy used in treating retinoblastoma include:

  • Internal radiation (brachytherapy). During internal radiation, the treatment device is temporarily placed in or near the tumor. Internal radiation for retinoblastoma uses a small disk made of radioactive material. The disk is stitched in place and left for a few days while it slowly gives off radiation to the tumor. Placing radiation near the tumor reduces the chance that treatment will affect healthy eye tissue.
  • External beam radiation. External beam radiation delivers high-powered beams to the tumor from a large machine outside of the body. As your child lies on a table, the machine moves around your child, delivering the radiation. External beam radiation can cause side effects when radiation beams reach the delicate areas around the eye, such as the brain. For this reason, external beam radiation is typically reserved for children with advanced retinoblastoma and those for whom other treatments haven’t worked.

Laser therapy (laser photocoagulation)

During laser therapy, a laser is used to destroy blood vessels that supply oxygen and nutrients to the tumor. Without a source for fuel, cancer cells may die.

Cold treatments (cryotherapy)

Cryotherapy uses extreme cold to kill cancer cells. During cryotherapy, a very cold substance, such as liquid nitrogen, is placed in or near the cancer cells. Once the cells freeze, the cold substance is removed and the cells thaw. This process of freezing and thawing, repeated a few times in each cryotherapy session, causes the cancerous cells to die.

Heat treatments (thermotherapy)

Thermotherapy uses extreme heat to kill cancer cells. During thermotherapy, heat is directed at the cancer cells using ultrasound, microwaves or lasers.

Surgery

When the tumor is too large to be treated by other methods, surgery may be used to treat retinoblastoma. In these situations, surgery to remove the eye may help prevent the spread of cancer to other parts of the body. Surgery for retinoblastoma includes:

  • Surgery to remove the affected eye (enucleation). During surgery to remove the eye, surgeons disconnect the muscles and tissue around the eye and remove the eyeball. A portion of the optic nerve, which extends from the back of the eye into the brain, also is removed.
  • Surgery to place an eye implant. Immediately after the eyeball is removed, the surgeon places a special ball — made of plastic or other materials — in the eye socket. The muscles that control eye movement are attached to the implant. After your child heals, the eye muscles will adapt to the implanted eyeball, so it may move just as the natural eye did. However, the implanted eyeball cannot see.
  • Fitting an artificial eye. Several weeks after surgery, a custom-made artificial eye can be placed over the eye implant. The artificial eye can be made to match your child’s healthy eye. The artificial eye sits behind the eyelids and clips onto the eye implant. As your child’s eye muscles move the eye implant, it will appear that your child is moving the artificial eye.

Side effects of surgery include infection and bleeding. Removing an eye will affect your child’s vision, though most children will adapt to the loss of an eye over time.

Clinical trials

Clinical trials are studies to test new treatments and new ways of using existing treatments. While clinical trials give your child a chance to try the latest in retinoblastoma treatments, they can’t guarantee a cure. Ask your child’s doctor whether your child is eligible to participate in clinical trials. Your child’s doctor can discuss the benefits and risks of enrolling in a clinical trial.

(Source: Mayo Clinic)

In most cases, doctors aren’t sure what causes retinoblastoma, so there’s no proven way to prevent the disease.

Prevention for families with inherited retinoblastoma

In families with the inherited form of retinoblastoma, preventing retinoblastoma may not be possible. However, genetic testing enables families to know which children have an increased risk of retinoblastoma, so eye exams can begin at an early age. That way, retinoblastoma may be diagnosed very early — when the tumor is small and a chance for a cure and preservation of vision is still possible.

If your doctor determines that your child’s retinoblastoma was caused by an inherited genetic mutation, your family may be referred to a genetic counselor.

Genetic testing can be used to determine whether:

  • Your child with retinoblastoma is at risk of other related cancers
  • Your other children are at risk of retinoblastoma and other related cancers, so they can start eye exams at an early age
  • You and your partner have the possibility of passing the genetic mutation on to future children

The genetic counselor can discuss the risks and benefits of genetic testing and help you decide whether you, your partner or your other children will be tested for the genetic mutation.

(Source: Mayo Clinic)

When your child is diagnosed with cancer, it’s common to feel a range of emotions — from shock and disbelief to guilt and anger. Everyone finds his or her own way of coping with stressful situations, but if you’re feeling lost, you might try to:

  • Gather all the information you need. Find out enough about retinoblastoma to feel comfortable making decisions about your child’s care. Talk with your child’s health care team. Keep a list of questions to ask at the next appointment. Visit your local library and ask for help searching for information. Consult the websites of the National Cancer Institute and the American Cancer Society for more information.
  • Organize a support network. Find friends and family who can help support you as a caregiver. Loved ones can accompany your child to doctor visits or sit by his or her bedside in the hospital when you can’t be there. When you’re with your child, your friends and family can help out by spending time with your other children or helping around your house.
  • Take advantage of resources for kids with cancer. Seek out special resources for families of kids with cancer. Ask your clinic’s social workers about what’s available. Support groups for parents and siblings put you in touch with people who understand what you’re feeling. Your family may be eligible for summer camps, temporary housing and other support.
  • Maintain normalcy as much as possible. Small children can’t understand what’s happening to them as they undergo cancer treatment. To help your child cope, try to maintain a normal routine as much as possible.Try to arrange appointments so that your child can have a set nap time each day. Have routine mealtimes. Allow time for play when your child feels up to it. If your child must spend time in the hospital, bring items from home that helps him or her feel more comfortable.Ask your health care team about other ways to comfort your child through his or her treatment. Some hospitals have recreation therapists or child-life workers who can give you more specific ways to help your child to cope.

(Source: Mayo Clinic)

New England Retinoblastoma Support Group
Provides emotional support and resources for families with retinoblastoma. Information and referral, phone support, conferences, literature, advocacy.
Phone: 1-800-562-6265
Address: New England Retinoblastoma Parents Support Group, P.O. Box 317, Watertown, MA 02272

American Cancer Society
Health information, coping with cancer, new treatment and research, discussion groups, locate resources in your community.
Phone: 1-800-227-2345l
www.cancer.org

Children’s Cancer Association
Visit this site and request a copy of The Kids Cancer Pages. It is a comprehensive national resource directory on childhood cancer. It was created to help connect and network families to organizations, information, resources, and to each other on a national basis.
Phone: 1-503-244-3141
www.ChildrensCancerAssociation.org

National Cancer Institute
The U.S. Government’s primary agency for cancer research and information.
Phone: 1-800-4-CANCER
www.nci.nih.gov

Young People With Cancer
This book provides parents with information on the most common types of cancer, treatments and side effects and common issues that arise when a child is diagnosed with cancer.
Phone: 1-800-4-CANCER (1-800-422-6237) and select the option to order publications Monday through Friday, 9:00 a.m. to 4:30 p.m. local time (within the U.S. and its territories).

The National Children’s Cancer Society
Provides information, emotional and financial support to children with cancer and their families for expenses related to cancer treatment. The website has special links just for kids and information on healthy caregiving for families.
Phone: 1-800-532-6459
www.children-cancer.com

Eye Cancer Network
Educational, diagnostic and treatment information about ocular cancers.
www.eyecancer.com

Band-Aids and Blackboards
A website about growing up with a medical problem from the perspective of kids and teens.
www.faculty.fairfield.edu/fleitas/sitemap.html

National Eye Institute
The U.S. Government agency conducts and supports research to help prevent and treat eye diseases. The website provides health information in English and Spanish.
Phone: 1-301-496-5248
www.nei.nih.gov

Patient-Centered Guides
Childhood Cancer Survivors; A Practical Guide to Your Future
Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers
Books written to give survivors and their families the information they need.
Phone: 1-800-998-9938
www.patientcenters.com

Candlelighter’s Childhood Cancer Foundation
A national non-profit membership organization whose mission is to educate, support, serve, and advocate for families of children with cancer, survivors of childhood cancer, and the professionals who care for them.
Phone: 800-366-2223
www.candlelighters.org

_______________________

Visual Impairment Resources

Visually impairment can be described as partially sighted, low vision, hard-of-seeing, or blind based on the degree of visual impairment. A person is considered LEGALLY blind when the best-corrected visual acuity is 20/200, or the person’s visual field is 20 degrees or less. Few legally blind persons have no sight; in fact, most have some remaining vision. Partially sighted or low vision generally refers to a severe visual impairment, not necessarily limited to distance vision. Low vision applies to all individuals with sight who are unable to read the newspaper at a normal viewing distance, even with the aid of eyeglasses or contact lenses. They use a combination of vision and other senses to learn, although they may require adaptations in lighting or the size of print, and, sometimes, Braille. Generally, the partially sighted individual has a central visual acuity range of 20/70 to 20/200 in the better eye with best correction by glasses.

Florida Division of Blind Services (DBS)
This state agency provides vocational rehabilitation and employment services for blind and visually impaired Florida residents. Services include school to work transition, job placement, counseling, vocational and academic training, orientation and mobility training, personal and social adjustments services and post-employment services. A part of DBS, the Florida Department of Education specialists from Children and Family Services serve eligible children who are blind or visually impaired so that they may reach educational and independent living goals.
Phone: 1-800-342-1330
www.myflorida.com/dbs

National Association for Parents of Children with Visual Impairments (NAPVI)
A national non-profit organization that enables parents to find information and resources for their children who are blind or visually impaired. NAPVI offers information and referral services, initiates outreach by providing seed money to promotes the development of state and local organizations, has a quarterly publication, advocates for educational needs, and offers emotional support and networking opportunities.
Phone: 1-900-562-6265
www.spedex.com/napvi

V.I. Guide
An Internet site that contains information on topics is pertaining to parenting and teaching children with a visual impairment. Information and links to other sites about vision-related services, special education, assistive technology and products, laws and legislation, entertainment, research, and other organizations and groups that might be of interest.
www.viguide.com

The Hadley School for the Blind
The Hadley School offers Parent/Child and Parent/Family correspondence courses on a variety of topics. Parent/Child courses include: Reach and Teach, which provides step-by-step teaching techniques and guideline to help parents assess and build on a child’s strengths; Child Development; Partners in Education; Learning, Play, and Toys; and Early Independence. Parent/Family course topics include Abacus I and II; Accessing Local Sports and Recreation; Braille Reading for Family members, College Bound, the Human Eye; Independent Living; Personal Computers; self-esteem.
Phone: 1-800-323-4238
www.hadley-school.org

Blind Children’s Center
This Los Angeles organization has a number of videos and publications (some in Spanish) that can provide useful information for families of blind or visually impaired children. Topics include: beginning nurturing, social, play and language interactions; teaching young children who are visually impaired; common concerns for the preschool child who is visually impaired or blind; feeding a child with a visual impairment; movement development for babies who are visually impaired; orientation and mobility for preschool children designing and constructing simple adaptive mobility devices for preschool children; multiple disabilities; and parents talk about their feelings.
Phone: 1-800-222-3566
www.blindcntr.org

_______________________

Other Organizations

American Council of the Blind
Phone: 1-800-424-8666
www.acb.org

American Federation for the Blind
Phone: 1-800-232-5463
www.afb.org

American Printing House for the Blind
www.aph.org

Lighthouse International
www.lighthouse.org

National Federation of the Blind
www.nfb.org

_______________________

Links to Other Websites

Eye Resources on the Internet
webeye.ophth.uiowa.edu/dept/websites/eyeres.htm

International Organization for the Blind
www.io4b.org

Blindness Resource Center
www.nyise.org/blind

A Blind Net
www.blind.net

Snuggl’ Up, Inc
Phone: 305-931-6333
www.snugglup.com

_______________________

Prosthesis

SNG Prosthetic Eye Institute
www.prostheticeye.com

_______________________

Travel

Angel Flight
Angel Flight is a non-profit, volunteer pilot organization that coordinates free air transportation on corporate aircraft for those with medical needs.
Phone: 1-800-352-4256
www.angelflightse.org

Midwest Express Miracle Miles
One free flight, thereafter flights are discounted. No financial requirements.
Phone: Call Natalie Fuerst at 1-414-570-3644

Corporate Angels
Private jets used by corporations that have empty seats, free flights. No financial requirements.
Phone: 1-914-328-1313
www.corpangelnetwork.org

Northwest Airlines, Kid Cares Program
Those with financial need have priority.
Phone: 1-612-726-4206
www.nwa.com/corpinfo/aircares/about/kidcares.shtml

American Airlines, Aadvantage Miles for Kids in Need
Helps those in financial need.
Phone: 1-817-963- 8118

The National Patient Travel HELPLINE
Helps those in financial need.
Phone: 1-800-296-1217
www.patienttravel.org

_______________________

Housing

American Cancer Society’s Winn-Dixie Hope Lodge
The American Cancer Society understands the challenges that families face when a loved one needs cancer treatment far from home. It can be uncomfortable and extremely costly to stay in hotels for weeks at a time. That’s where Hope Lodge can help. It offers a friendly environment with no limit on the length of stay. Hope Lodge provides several kitchen areas where families can cook their own meals. While Hope Lodge does not provide medical, counseling, or religious services, it is far more than a hotel. It’s a home-away-from-home when it’s needed most.
Phone: 1-800-ACS-2345; In Miami: 305-547-2210; Other areas: 1-317-415-5000

Ronald McDonald House
Since 1974, families around the world have been calling Ronald McDonald House a “home-away-from-home.”
Address: Ronald McDonald House Charities, One Kroc Drive, Oak Brook, Illinois, 60523
Phone: 1-630-623-7048
www.rmhc.com

(Source: eyecancermd.org)

AbledTeens Photo shows 13 year old Max Lamm walking with his guide dog Seal. Max lost his vision as an infant to Retinoblastoma - cancerous tumors in his eyes. Max has sandy blonde hair cut neatly and is wearing a blue t-shirt with khaki shorts. We can see his hand on Seal's harness handle but the aspect ratio of the photo doesn't let us see Seal except for the top edge of him. He looks like he might be a collie-labrador mix. Seal is black with tan spots above his eyes, a white streak from between his eyes to around his nose flanked by black and then tan coloring around his mouth. There is a nicely mowed lawn and trees in the background in Max's home-town of Mars, Pennsylvania.

Max Lamm Is Not Defined By His Lack Of Sight

 

There is always a great temptation for the media to make a big deal when someone who is living with sensory loss or physical impairment achieves something. The achievement is always certainly laudable, but not because of the so-called disability.

It should be celebrated for the same reasons we mark achievements by non-disabled persons who mark these milestones because of their personal and distinctive combinations of preparation, determination, discipline and, above all, character.

Max Lamm is a 13 year-old who lives in Mars, Pennsylvania. He is a junior wrestler who has excelled in all these personal and distinctive markers.

However, most of the media outlets and websites that are sharing a video profile of him done by the team at BleacherReport.com are touting him as a ‘blind’ wrestler. That’s something that Max would hate. In their description of the video on YouTube, the folks at Bleacher Report even admit that, “The one lesson Max repeated throughout our interviews is that he’s not a ‘blind wrestler’, he’s just a regular kid.” Yet the headline on their website and on YouTube both refer to him as ‘Blind Wrestler Max Lamm’.

As you’ll discover in the video, Max has simply adapted his remaining senses and used his brain, as any other wrestler would, to evolve his technique. He’s learned well from his coaches, applied his own instincts and has been well supported by his parents because they’ve refused to raise him as a ‘disabled child’. Max finished his last season with a 10-1 record, dominated his weight class in a regional tournament this past summer and also showed that he’s a disciplined and talented student by winning his school’s Geography Bee.

Does his loss of vision give him a better ability to focus than other students? Has his upbringing influenced his determination and attitude, not to mention the confidence that his loyal guide dog, and best friend, Seal helped to evolve? They were only matched up in 2012 by MIRA. Who knows?

It’s likely a combination of all of the above coupled with Max’s individual and distinct personality and character.

These are issues Abled.com Co-Founder Laura Meddens can relate to. She progressively lost her sight as an adult, but adapted along the way with the help of assistive technology that’s improved over the years, and with the help of her previous and current Seeing Eye® guide dogs Wagner, and Nugget, respectively.

Laura, like Max, also doesn’t want to be referred to as a ‘blind entrepreneur or a ‘blind advocate’, she’s Laura – a person who wants to live an ‘Abled’ life that is made more achievable with the assistive and adaptive options available to her.

So it is with Max, and the reason we feature him as one of our AbledTeens is for the combination of his character, integrity and talents, as well as how he’s overcome the sensory disadvantage that infantile retinoblastoma caused, that make him an inspiration to all of us, blind or not.

AbledPhoto courtesy of MiraUSA.org shows Max Lamm with his guide dog Seal. Max is wearing a blue sleeveless sports jersey with black shorts that have red stripes along the side. He is kneeling beside Seal, his St. Pierre breed guide dog on the grass near some bushes. IN the photo next to it, Max is sitting on a bench in a park in the summertime with another female student and both have their guide dogs at their feet. There is another girl sitting on the grass in the foreground.
AbledPhotos shows an info graphic on Retinoblastoma from St. Jude Children's Research Hospital titled What Is Retinoblastoma in white text on a Cerulean blue background. Then black text on a light blue background with numbers in red reads as follows: This rare tumor can occur in one or both eyes. It is caused by a genetic defect in the retina, the light-sensitive tissue at the back of the eye. 250 to 300 children in the U.S. develop retinoblastoma each year. 40 percent of children with retinoblastoma have tumors in both eyes. These are all caused by the heritary form, which means the mutation occurs in all of the body's cells. 60 percent of children with retinoblastoma have disease in only one eye. Of these, most have the sporadic (non-hereditary) form. There is a 95 percent survival rate for children whose tumors have not spread beyond the eye. There is a 50 percent risk with each pregnancy that individuals with the hereditary form of retinoblastoma will pass the mutated gene to their children. The bottom panel reads: Children who have retinoblastoma in both eyes generally have the familial form of the disease. Although some children inherit this mutation from their parents, others develop a new mutation, which can be passed on to future generations. This is followed by the logo of St. Jude's Children's Research Hospital which shows a side view of a waist-high white silhouette of a child against the cerulean blue background that joins into an arc over the text of the logo. Click here to go to the Hospital's website.

The Story of Max and Seal by Max Himself

From MIRA Foundation USA

My name is Max Lamm and I am 12 years old. Three years ago I started to lose what little vision I had. I hated learning to use the white cane even though it did help me get around. My parents promised me that they would investigate getting a guide dog. My dad was denied by several guide dog groups because of my age, I was almost 11 years old. One night , my dad was researching guide dogs and came across MIRA. He immediately called, Bob Baillie, and inquired about the foundation.

Bob was going to be in the Philly area where we were going to be visiting and agreed to meet us…it was meant to be! I loved Bob’s dog, Devon, instantly! I was working so hard with orientation and mobility with a cane; I couldn’t imagine how different it would feel with a dog. I knew how different I would look with a dog and not a cane, though, and at my age, appearance is everything!!!

April 2011 I traveled to North Carolina to have my orientation and mobility skills tested as well as see if I could handle a guide dog. It is a feeling that I cannot explain when I was holding on to a harness and not a cane. I worked hard and it paid off, I was headed to Canada that summer.

Five days after my eleventh birthday my mom and I flew to Canada to start the journey. Training started when we got there and never ended until I boarded my airplane to go home. I have never worked so hard in my life. The trainers and staff were awesome. I learned to speak a little French because that is what my dog, Seal, understands. It was difficult at times to be away from home but it was short term and I knew I would leave with a new best friend.

Seal is a handsome St. Pierre breed. A mix between a Labrador and a Bernese Mountain Dog. I am constantly told that Seal is so beautiful and that his eyebrows are the cutest! Seal fit right into our home immediately. If you own a dog you know the responsibility of caring for them and I do it well. I brush his teeth and fur, feed him daily, take him outside, and work on maintaining his command and street skills. Seal rides the school bus with me everyday and goes to all my classes. His least favorite class is gym class because he has to sit at the side of the gym and watch me. He is the best snuggler and best friend.

I like to do things for myself and Seal allows me to do this while not holding on to someone’s arm or a white cane. When I am out I am stopped at least twice by people who want to talk about the dog and how great we look together. I was never told that when I used the cane. I am proud of myself and continue to work hard so I will be as independent as possible.

See more at: MIRA USA

Related Agencies Banner
Abled Public Service Ad for the American Association for Pediatric Ophthalmology and Strabismus. Click here to go to their website.
Abled Public Service Ad for Retinoblastoma International. Click here to go to their website.
Abled Public Service Ad for Fighting retinoblastoma Childhood Eye Cancer Trust in the U.K. Click here to go to their website.
Abled Public Service Ad for the Canadian Retinoblastoma Society. Click here to go to their website.
Abled Public Service Ad for Through An Angel's Eyes - Supporting children and families with eye cancer. Click here to go to their website.
Abled Public Service Ad for MIRA Foundation Canada and USA that provides guide dogs for blind children between the ages of 11 and 17. Click here to go to their website.
Abled Public Service Ad for St. Jude Children's research Hospital in Memphis, Tennessee. Click here to go to the Hospital's website.
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AbledAlert link banner Shows a photograph of healthcare workers dressed in turquoise blue surgical gowns , hairnets and pink medic al gloves set against a world map and chart showing data on Ebola outbreaks since 1976. The headline reads: Abled Alert: Outbreak: Tracking the deadliest yet. Click here to go to our Special Ongoing Coverage on the Ebola Virus outbreak in West Africa.
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AbledRx link box shows a photo of various Aspirin bottles and boxes. The headline reads: AbledRx; Aspirin: Linked to Huge Cut in Cancer. Click here to go to the post.
AbledCauses post link box shows a photo of Max Page ('Lil Darth Vader') holding a Joy Jar filled with trinkets, toys and inspirational messages for sick children in hospital. A photo card forms the other half of the picture and shows Jessie Rees who originated the idea of Joy Jars before losing her battle with cancer. The headline reads: Joy Jars: Max Keeps Jessie's Dream Alive. Click here to go to the post.
AbledCauses link box shows Nick Auden hugging his three children. The headline reads: Locky's Dad: His 'Right To Try' Legacy. Click here to go to the story.
AbledCauses link box shows a photograph of web evangelist Molly Holzschlag with her trademark curly long hair before she became ill with a rare disorder. The other photo is a more recent one, showing Molly with much shorter hair covered by a colorful head scarf. The text reads: AbledCauses: Molly Holzschlag: The Fight of Her Life. Click here to go to the story to learn how you can help this Internet Pioneer beat this rare illness.
AbledCauses link box shows young Ben Pierce covering his face in his hands as he says during an interview 'I don't want to go blind'. The headline reads: Help his Visual Bucket List. Click here to go to the post.
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AbledRx-New Study Links Long-Term Aspirin Use With Dramatic Cut In Cancer Cases

POSTED ON August 7th  - POSTED IN AbledRx
AbledRx banner shows three icons comprised of the ABled gradient green rounded rectangle with the text Rx in the center icon flanked by medical icons over the background of the sun rising over the curve of the Earth's horizon.
AbledRx Post Banner shows some boxes of Bayer Aspirin with the headline: New Study Links Long-Term Aspirin Use With Dramatic Cut In Cancer Cases.

Aspirin was the brand name given to acetylsalicylic acid (ASA) and its evolution stretches back to ancient times when medicines were made from willow bark and other plants. Hippocrates wrote around 400 BCE of salicylic tea being used to reduce fevers.

By the nineteenth century pharmacists and chemists were experimenting with various chemicals related to it and a form of it developed by Bayer was named Aspirin. Its popularity grew over the first half of the twentieth century.

Read more about its history and its pharmacological profile at Wikipedia.

Aspirin relieves headaches because of its effect on a chemical called cyclooxygenase. Cyclooxygenase is an enzyme the body uses to produce a chemical called prostaglandin. Prostaglandin is activated when the body is hurt. It tells the brain there is an injury somewhere, and the brain in turn activates the sensory response we know as pain.

So, if you have an infection and your body temperature rises, causing a fever, prostaglandin tells your brain there’s a problem, and your brain triggers a headache.

When you feel a headache and take an aspirin, the result is that cyclooxygenase production is inhibited, leading to a decrease in prostaglandin production and therefore a decrease in pain response.

People have used aspirin for things like headaches for more than a hundred years. In the 1980s, a group of 22,000 men, all doctors, did a little experiment. Half the subjects took an aspirin every other day, and half took a placebo. At the end of the study, twice as many members of the group taking the placebo had experienced heart attackscompared with the aspirin group [source: YHF].

People who take the recommended dose of between 80 mg and 325 mg a day have a better chance of avoiding heart attacks and, if they do have one, of surviving it [source: MedicineNet]. Why is aspirin so good for people with heart disease?

It’s because it blocks cyclooxygenase and, in turn, certain prostaglandins. As it turns out, prostaglandins don’t just trigger the feeling of pain. Some of them also help blood platelets clump together to form clots. Aspirin is an antiplatelet agent. It inhibits that prostaglandin that makes platelets stick together. If clots can’t form in arteries, the chances of a heart attack decrease dramatically.

Source: How Stuff WorksRead More

Some people are allergic to aspirin, and they should always avoid it. Also, since aspirin inhibits blood clotting, people with bleeding disorders and things like ulcers can’t use it, because it can lead to uncontrolled internal bleeding. It can interfere with certain medications and it can cause stomachaches and other gastrointestinal problems. In high doses, it can even cause a ringing in your ears.

Because it does have these side effects, doctors usually don’t recommend an aspirin regimen for healthy people who do not have disease. For people at low risk, the benefits just don’t outweigh the dangers.

Source: How Stuff Works

AbledRx: Photo shows acollection of vintage boxed bottles and tubes of Bayer Aspirin. The caption reads: The evolution of Aspirin from a simple analgesic to a modern day wonder drug.

Daily Aspirin Significantly Reduces Cancer Risk

A new study from Queen Mary University in London concludes that taking 75 to 80mg of aspirin a day significantly lowers the risk of cancer.

The University says in a news release that to reap the benefits of aspirin, the evidence shows people need to start taking a daily dose of 75-100 mg for at least five years and probably 10 years between the ages of 50 and 65. No benefit was seen while taking aspirin for the first three years, and death rates were only reduced after five years.

If taken for 10 years, bowel cancer cases decreased by 35 percent and deaths from the disease by 40 percent, according to the research. The risk of esophageal and stomach cancers are reduced by 30 percent.

Dr. David Agus told “CBS This Morning” that the pill is most effective if taken long-term.

“At year five, the benefits dramatically outweigh the risk, and it continues on where the benefits grow and grow,” Agus said. “So if you take aspirin for 20 years, there’s a dramatic reduction in the overall death rate of people compared to the people who didn’t take aspirin.”

Agus says aspirin is effective against cancer because it is an anti-inflammatory.

“We think the daily dose is something that lowers or tempers the inflammation, reducing the risk of cancer and heart disease over time,” he said.

For 60-year-olds, a daily aspirin regimen for 10 years increases the risk of stomach bleeding from 2.2 percent to 3.6 percent. Agus advises patients get the okay from their doctor before adding the pill to your daily routine.

“Doctors really need to talk to their patients,” Agus said. “It’s not for everybody. If you have upset stomach or bleeding, it’s probably not for you.”

Overall, rates of serious or fatal gastrointestinal bleeding are very low under the age of 70, but increased sharply after that age. Another side effect of aspirin use is peptic ulcer, the risk of which is increased by 30-60%.

The study also uncovers uncertainty over the most appropriate dose of aspirin required to maximize the benefit / harm ratio, with doses varying between 75 mg to 325mg a day in different clinical trials and studies. It is also not clear whether taking aspirin for longer than 10 years will result in greater benefits.

Professor Jack Cuzick, Queen Mary University of London, comments: “It has long been known that aspirin – one of the cheapest and most common drugs on the market – can protect against certain types of cancer. But until our study, where we analysed all the available evidence, it was unclear whether the pros of taking aspirin outweighed the cons.

“Whilst there are some serious side effects that can’t be ignored, taking aspirin daily looks to be the most important thing we can do to reduce cancer after stopping smoking and reducing obesity, and will probably be much easier to implement.”

“Our study shows that if everyone aged between 50-65 started taking aspirin daily for at least 10 years, there would be a 9% reduction in the number of cancers, strokes and heart attacks overall in men and around 7% in women. The total number of deaths from any cause would also be lower, by about 4% over a 20-year period. The benefits of aspirin use would be most visible in the reduction in deaths due to cancer.

“The risk of bleeding depends on a number of known factors which people need to be aware of before starting regular aspirin and it would be advisable to consult with a doctor before embarking on daily medication.”

Prof Cuzick said the recommended dose was 75mg per day and that the risk of internal bleeding associated with aspirin could be cut by around one third by testing and treating anyone found to be carrying the infection, H.pylori in their stomachs.

Agus says that while the preventative benefits are the same for men and women aged 50-65, women should start taking aspirin later in life than men.

“Women get heart disease a little later and cancer a little later,” he said. “So while it’s beneficial in both, the recommendations are starting it a little later in women than in men.”

Sources: Queen Mary University London | CBS News

Abled Rx: Graphic banner reads: Aspirin Study Results. Benefits of Daily 75 to 80 milligrams of Aspirin after 10 years: A 35 percent drop in bowel cancer cases; a 40 percent drop in death from the disease; a 30 percent drop in esophageal and stomach cancer. 10 year side-effects: For 60 year olds, rish of stomach bleeding rises from 2.2 percent to 3.6 percent.

Vintage Aspirin Advertising & Packaging

Photo shows a vintage bottle of Bayer Aspirin from 1889. It contains a bit of white powder and has a beige label around the outside middle of the bottle with artwork of the era.
A yellowed clipping of a vintage ad for Aspirin in a French newspaper in Paris with text in french and a line drawing of a nurse dropping aspirin into a glass.
Vintage Aspirin ad from a 1917 edition of the New York Times shows had drawn illustrations of two boxes of Bayer Aspirin and one metal pcoket pack,. The largest box shows about half of one bottle protruding above the opened box flaps. The text reads: One Real Aspirin. Counterfeits and substitutes may be ineffective, and even harmful. Refuse them. Protect yourself by demanding (and then in large bold text) Bayer-Tablets of Aspirin. Smaller text then says Every tablet and every package of genuine Aspirin bears the Bayer Cross -Your Guarantee of Purity flanking an illustration of an Aspirin tablet with the word Bayer imprinted vertically and horizontally. Pocket boxes of 12, Bottles of 24 and Bottles of 100, followed by small print with trademark information.
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AbledHealth-Obamacare-Beware Of Automatic Renewal To Avoid Insurance Premium Sticker Shock

POSTED ON July 28th  - POSTED IN AbledHealth
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AbledHealth Post banner shows a laptop screen on a desk in an office with the health.gov website on the screen. The headline reads: Obamacare: Beware Of 'Automatic Renewal' To Avoid Insurance Premium Sticker Shock.

ObamaCare is the un-official nickname given to The Patient Protection and Affordable Care Act which was signed into law in the United States by President Barack Obama on March 23, 2010. 

ObamaCare’s main focus is on providing more Americans with access to affordable health insurance improving the quality of health care and health insurance, regulating the health insurance industry, and reducing health care spending in the U.S.

Source: ObamaCareFacts.com

ObamaCare explained in 214 words from WhiteHouse.gov

On March 23, 2010, President Obama signed the Affordable Care Act into law, putting in place comprehensive reforms that improve access to affordable health coverage for everyone and protect consumers from abusive insurance company practices. 

For those Americans who already have health insurance, the only changes you will see under the law are new benefits, better protections from insurance company abuses, and more value for every dollar you spend on health care. If you like your plan you can keep it and you don’t have to change a thing due to the health care law. The President addressed concerns from Americans who have received letters of policy cancellations or changes from their insurance companies in an interview with NBC News,watch the video or read a transcript

Key Elements:

AbledHealth Photo shows U.S. President in the Oval Office at the White House surrounded by invited politicians and other people as he signs into law the Affordable Care Act that has since become known as Obamacare in March of 2010.

Don’t Let Big Premium Increases Catch You By Surprise

 

If you’re one of the 10.3 million U.S. consumers who have signed up for what’s been nicknamed ‘ObamaCare’, you’ll have to be extra vigilant when your coverage comes up for renewal. You could end up paying more if you’re not paying attention to some of the ‘fine print’ items.

Health and Human Services, hoping to prevent logjams during the 2015 open enrollment season, have proposed making automatic renewals available to the 10.3 million who have already enrolled saying they will get ‘the exact dollar amount’ they are currently receiving.

But the worry is that HHS isn’t taking into account a whole bunch of things such as cost of living adjustments, new plans and bids from insurance companies, and changes in the community benchmark plans because millions of new customers will be signing up for coverage when open enrollment begins on November 15.

If you currently have coverage, you’ll have almost a month to renew or make changes to your policy, otherwise you’ll suffer a gap in coverage come January 1, 2015.

And because the financial aid subsidy that benefits about 80% of those who signed up for private coverage is, to put it politely, is quite complex, you’d probably do yourself a favor by contacting your health insurance exchange to update any changes in income, job status, family size, whether you’ve moved, or anything else that could have an impact on your subsidy.

You can do that anytime before the open enrollment floodgates open. If you want to change over to a new plan, you’ll have to wait until November 15. But in the meantime, you would do well to check on new and upcoming insurance plans and shop around because it will be quite likely that your current policy and subsidy formula will be out-of-date come the fall.

Despite the initial launch issues and partisan political naysaying along the way, HHS announced this week that those 10.3 million consumers have saved a total of $9 billion dollars on health insurance premiums.

AbledHealth photo shows an infographic from the White House website that reads: Learn how Health Reform benefits Americans, Free Preventive care; Anew way to get insurance, by state; coverage for young adults under 26; coverage for pre-existing conditions; no cancellations or lifetime limits on care; rebates from insurance companies; lower cost coverage; prescription drug savings for seniors. CLick here to go to the White House website section on Health Care.
AbledHealth Photo shows a graphic box detailing Important Dates to Remember: What to Do: Before November 15 If already enrolled, with a subsidy, contact your health insurance exchange to update any changes in income, job status, family or location. Check out other plans. After November 15 Renew or make changes to your existing coverage or switch to a new plan within a month to avoid January 1 coverage gap.
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AbledCauses-Joy Jars-Max Page Helps To Keep Jessie’s Dream Alive

POSTED ON July 28th  - POSTED IN AbledCauses
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AbledCauses Post Banner shows a split screen of two photos. In the first, Max Page, star of the 'Lil Darth Vader Volkswagen Superbowl Ad is holding a Joy Jar which is full of treats and playthings for kids in hospital. In the second photo a card on a table tells the story of Jessica Joy Rees who came up with the idea for Joy Jars. The headline reads: Joy Jars: Max Page ('Lil' Darth Vader) Helps Keep Jessie's Dream Alive For Hospital Kids.

Joy Jars® are the creation of the late Jessie Rees, a 12 year old cancer patient who started filling them as a way to send hope and joy to other kids like her who are fighting cancer. As the Jessie Rees Foundation NEGU (Never Ever Give Up) says, Jessie knew that fighting cancer made you feel lonely and limited. She also knew “love” stuffed in a jar was a great remedy.

Jessie personally sent over 3,000 Joy Jars to kids during her fight. Since then, over 80,000 Joy Jars have been stuffed and sent to courageous kids worldwide.

From imdb.comMax Page was born as Maxwell James Page. He is an actor, known for The Young and the Restless (1973), Prime Suspect (2011) and I Didn’t Do It (2014).

Max played a young pint sized Darth Vader in the leaked Volkswagen Passat Superbowl Commercial that went viral on You Tube 4 days before the Superbowl. The video received over 12 million views in four days and many speculated it was a girl under the mask. Max’s uncle a Radio Dj out of Virginia confirmed Max appeared in the commercial as well as many media outlets in the days the video went extremely viral.

Max is a heart patient at, and an advocate for, Children’s Hospital Los Angeles for treatment of Tetralogy of Fallot, a heart defect found in children. His parents are Jennifer and Buck Page. He has a brother named Ellison.
You can find Max’s facebook page here, and his Twitter account here, to follow his advocacy for children facing medical challenges.

From NEGU.org: 

Jessie Rees was a beautiful, athletic, smart and compassionate 12 year old girl who bravely fought two brain tumors (DIPG) for ten months and two days. Her fight started on March 3, 2011 and ended on January 5, 2012 when she earned her angel wings.

During her courageous fight, Jessie decided to focus on helping other kids fighting cancer that couldn’t leave the hospital. This desire led to the creation of her fun-filled JoyJars® and Never Ever Give Up (aka: NEGU®) message.

Today, JoyJars and NEGU are recognized symbols of hope, joy and love in over 27 countries.

You can contribute with a donation by joining the JoySquad.

You can also request a Joy Jar for your child or a ‘Courageous Kid’ you know. 

You can also request JoyPacks for a hospital.

Any way you choose to contribute will be greatly appreciated by the children whose spirits you help to lift.

AbledCauses - Photo shows a closeup of a photocard with a picture of Jessie Rees. The text reads: The Jessie Rees Foundation was inspired by 12 year-old Jessica Joy Rees, better known as "Jessie". Jessie was a beautiful, athletic, smart and compassionate girl who fought two brain tumors from MArch 3, 2011 to January 5, 2012. On that painful day, Jessie left an amazing legacy of love that her family and foundation now continue. During her 10 month courageous fight, Jessie shared her message of NEGU (Never Ever Give Up) with as many kids as she could. She did this at the hospital, through her blog and on her Facebook fan page. She knew fighting cancer made you feel lonely and limited so she decided to send encouragement to over 3,000 kids. Jessie's wish was to encourage every kid fighting to NEGU, which includes you. Stay Strong and Never Ever Give Up followed by Jessie's signature in blue with a tiny heart.

Two Amazing Brave Kids And Their Mission To Help Other Sick Kids

This is a story of two brave kids who know what it is to stare a life-threatening illness in the face. Sadly, one of them is no longer with us, but her spirit looms very large over the legacy she has left behind.

The other shot to fame in a viral video during a Super Bowl game and continues to find fame as a member of the cast of the television soap The Young & The Restless, and through his advocacy for other children who are facing health challenges of their own.

Meet the inspiring spirit of Jessica Joy Rees, known to everyone as Jessie, and the pint-sized force that is Max Page.

Jessie fought the brave fight against two brain tumors from March of 2011 to January 2012, and during that time her parents helped her form a Foundation based on her mantra of NEGU (NEVER EVER GIVE UP) and  helped supported her effort to spread joy to as many other sick kids in the hospital as she could with her Joy Jars.  

Little did she realize how much these plastic jars filled with all kinds of trinkets and messages of hope would come to mean to the thousands of children who would come to receive. And little could she have imagined  how great a legacy she would leave behind after she got, as her family put it, ‘her angel wings’. To date over 80,000 Joy Jars have been distributed to children in almost 30 countries.

Enter ‘Lil’ Darth Vader – Max Page – To Pick Up The Torch

Like Jessie, Max Page is one of those extraordinary kids who, in the face of a life threatening illness, seems to just get stronger and radiate that strength to other kids around him.

Max first shot to fame as the star of Volkswagen’s ‘The Force‘ Ad that went viral even before it aired during coverage of the 2011 Super Bowl, and has since racked-up over 60 million views on YouTube.

Then as more people wanted to find out who was behind Mini Darth Vader’s mask, media stories soon focused on the battle Max was waging against a congenital heart condition called Tetralogy of Fallot which is the most common cause of blue baby syndrome

He now proudly shows off the scars from his pacemaker operation as he visits other children facing heart surgery or battling other medical conditions and has ‘picked up the torch’ in wanting to help fulfill Jessie’s desire to get Joy Jars to as many sick kids as possible. Late last year he helped to fill Joy Jars at an MomsLA event for Mom bloggers and announced his goal to try and fill over 100,00 Joy Jars this year.

You can help Max and everyone at Jessie’s Foundation to reach that goal by making a donation here.

All of us at Abled.com are proud to raise awareness about this incredible effort by two very incredible kids!

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AbledCoping-Father of Lockerbie Victim Counsels Against Revenge Mentality

POSTED ON July 26th  - POSTED IN AbledCoping
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Jim Swire is the father of Flora, who was one of the 270 victims of the bombing of Pan Am Flight 103 over the Scottish town of Lockerbie in 1988. The views expressed in this commentary are solely his.

Biography of Dr. Jim Swire from LockerbieTruth.com

Born within the walls of Windsor Castle and lived much of his early life in Bermuda and the Isle of Skye. After an education at Eton and Cambridge he took a degree in medicine at the University of Birmingham, later becoming a general practitioner in Bromsgrove, Worcestershire. 

As the media frenzy slowly calmed, TV documentaries appeared from time to time, and a tall, white-haired country doctor became spokesman for the British relatives. Events moved seemingly inevitably towards the trial of two accused Libyans. Yet without his efforts and those of his close friends, notably Professor Robert Black QC of Edinburgh University, that trial might never have come to pass.

Jim Swire transformed those first months of mourning for the loss of a beloved daughter into a challenge to the leaders of three continents. Along the way this gentle man would attract a host of enemies and a galaxy of friends. He raised once again the problem faced by mankind since history began, that of the interplay between a nation’s government and the questioning mind.

He is among the most informed about the Lockerbie tragedy, having been intimately involved from the night of the bombing. He visited the United States, the United Nations, Germany, Libya and a number of Arab countries and key cities in the United Kingdom in his investigation of the event.

He continued to research the subject long after the media lost interest, studying each nuance of the words used by the prosecution and defence lawyers. Apart from those in the court itself, he is one of very few who have studied all the evidence presented at trial, totaling 12,000 pages of transcript.

He is among a growing number convinced that the full story of Lockerbie has not yet been revealed.

A Photo shows Dr. Jim Swire kneeling beside the gravestone of his Daughter flora who died in the bombing of Pan Am Flight 103 over Lockerbie, Scotland. Dr. Swire has white hair and is wearing glasses, a blue dress shirt with a red and gold striped tie under a yellow sweater with khaki slacks. He is resting his left arm on the top of the octagonal black and brown granite headstone. Photo from the West Highland Fee Press. Click here to go to their August 2013 profile of Dr. Swire.

Lockerbie Relative: Grieve MH17 Through Love, Not Revenge

 Special to CNN: By Dr. Jim Swire

 

The first question for many relatives of the victims of MH17, as for us after Lockerbie, will be whether their loved ones suffered.

Explosive decompression of an aircraft fuselage at 35,000 feet will cause almost instantaneous loss of consciousness. Explosive decompression is a terribly apt phrase.

If it turns out to be true that MH17 was hit by a Buk Soviet-era SA missile, their warheads contain about 140 times the explosive in the PA 103 bomb. It seems impossible therefore that anyone aboard could have remained aware to suffer in the aftermath.

The essence of the tragedy of MH17 is the suffering of the relatives. Some will need to view the bodies of those they lost. Surely they deserve security to say their last farewells. They should have that option. Bodies need to be treated with respect and precision of identification.

I believe that in the case of MH17 the United Nations should also oversee immediate sending of an international team of investigators, covered by force if necessary, to ensure that relatives’ needs, the bodies themselves and the evidence field are protected. It is already very late, but not too late. There has already been looting, abhorrent to relatives, there is something particularly unsavory about the thought of unauthorised interference with bodies, or indeed personal effects of the dead.

There will now be some uncertainty about the evidential material on site. Maybe the U.N. should in future have a standby arrangement for immediate deployment of such an international “sterilizing force.” Even in the case of Lockerbie, evidence emerged in court of improper interference with potentially evidential material on the crash site within Scotland.

In the UK we found that a relatives’ group predicated on the concept of allowing everyone to grieve in their own way, but always there to support its members, helped. The humanist, highly caring, relative co-ordinating our group cannot know how many of us she has helped through her dedication and skills.

One of the most difficult yet most rewarding aspects of Christ’s philosophy was to extend love to others even when they seem to be your enemy. We have witnessed the bitterness and personal destruction that can spring from rampant lust for revenge.

Lust for revenge is natural, but self-defeating, for the consequence of revenge is so often further revenge. Nor does it even bring peace of mind to the avenger. Of course we condemn the actions of perpetrators and would rightly have them punished for what they have done, but we don’t have to hate the perpetrators themselves. Imprisoned, they may emerge one day to do good.

The late Nelson Mandela and Archbishop Desmond Tutu helped to create the Truth and Reconciliation Commission. That concept can only work if truth precedes the attempts at reconciliation. Truth may become a fickle wraith for families to pursue through the labyrinth of International politics. It was Mandela too who publicly warned, long before the trial of those accused by the U.S. and UK of responsibility for Lockerbie, that: “No one country should be complainant, prosecutor and judge.”

The West ignored this warning.

It is perhaps significant that the Netherlands, which lost far more citizens in MH17 than any other country, finds herself already the home of the International Criminal Court.

Powerful governments have powerful means of controlling what we know and believe. International courts should be immune to that. Perversely it was the evidence produced at the Lockerbie trial in Zeist, Holland, which confirmed for some that Moammar Gaddafi’s Libya was responsible.

But for other close watchers, there were doubts there which have now greatly increased and led 25 UK Lockerbie relatives, together with members of the family of the one Libyan found guilty, recently to lodge a request for a third appeal against the Zeist verdict with Scotland’s Criminal Case Review Commission.

Nowadays we have a better route, through the International Criminal Court, and what those of us who are not MH17 relatives should do is to monitor and encourage all efforts to pass the whole known truth to the MH17 relatives and to discover and detain those responsible. It is no coincidence that Holland already hosts the ICC, for that nation’s record in support of international justice is outstanding.

MH17 relatives may also find help from the small UK charity Disaster Action. This cannot deal with so huge a tragedy directly but carries within it wisdom distilled from Lockerbie and other tragedies.

 

AbledCoping photo shows Dr. Jim Swire and his wife Jane sitting in their home holding a framed photo of their daughter Flora who died in the bombing of Pan Am Flight 103 over Lockerbie Scotland in 1988.

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AbledCauses-The Legacy Of Save Lockys Dad-Right To Try Laws Access Unapproved Drugs

POSTED ON July 24th  - POSTED IN AbledCauses
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AbledCauses Post Banner shows Amy Auden, the widow of Nick Auden leaving a memorial service for her husband at St. Andrews Church in Brighton, Australia. She has long brown hair and his wearing a shamrock green coat and is walking between two unidentified women. She is looking down, her face full of grief and her eyes full of tears. The headline reads: AbledCauses: The Legacy of 'Save Locky's Dad': 'Right To Try' Laws To Access Unapproved Drugs.

It was one of the bravest and heartbreaking fights – and at the same time – one of the most unfair. While Nick Auden didn’t live long enough to see it, the legacy of the ‘Save Locky’s Dad‘ campaign is galvanizing state governments across the United States into passing ‘Right To Try‘ laws to allow terminally-ill patients, in consultation with their doctors, to gain access to experimental drugs not yet approved by the FDA.

But it’s not an achievement without controversy. Read more about the laws and the issues they are raising by clicking on the additional tabs in this section. 

In mid-May, 2014 in the Auden family’s adopted state of Colorado, Governor John Hickenlooper signed into law the first ‘Right To Try’ law in the United States to allow terminally-ill patients to gain access to experimental drugs without federal approval.

The ‘Right To Try’ For The Terminally Ill

by Michael Ollove | Stateline

Photo by Justin Ferland Photography shows 15 year old Austin Leclaire sitting in an electric wheelchair with his left arm around the shoulder of his 12 year-old brother Max in the backyard of their home in Pembroke, Massachussetts. Both show the physical effects of Duchenne muscular dystrophy but they are less pronounced in Max who is receiving experimental drugs for the disease. Both boys are smiling at the camera and you can see fallen autumn leaves and a woodpile in the background.

Fifteen-year old Austin Leclaire and his brother Max, 12, of Pembroke, Massachusetts, share the deadly degenerative disease Duchenne muscular dystrophy. But over the course of the past 144 weeks, the boys’ physical conditions have progressed in opposite directions.

Max has regained functions – he has abandoned his wheelchair and can now run, tote his own backpack to school and even ride a bike. Austin’s capabilities are diminishing. He cannot walk at all, and he’s lost the ability to brush his teeth or hold a water bottle. He expects that soon he won’t be able to play drums anymore, one of his few remaining physical pleasures.

The difference in their  trajectories is that Max has been in a clinical trial for nearly three years, during which he has been given weekly infusions of the experimental drug eteplirsen, manufactured by Sarepta Therapeutics Inc. Austin was deemed unqualified to get the drug because of his more advanced condition.

Withholding experimental drugs from the most gravely ill has fueled several states to pass so-called “right-to-try” legislation that would make these drugs available without Food and Drug Administration approval to terminally ill patients with no other options. 

Some critics of the years-long FDA drug approval process, with its requirement for multiple clinical trials, contend that it is much longer than it should be, thereby keeping some promising drugs from those who might benefit, particularly those, like Austin, with time running out. The Tufts Center for the Study of Drug Development says it normally takes 5½ to 10½ years for a drug to receive FDA approval.

Because of that, Colorado, Missouri and Louisiana all passed right-to-try legislation this year that would enable those with terminal illnesses and no other treatment options to secure investigational drugs before final FDA approval if the drug manufacturer is willing to provide them. Arizona voters will decide a similar measure in a referendum in November.

The legislation passed overwhelmingly and with bipartisan support, often after lawmakers heard anguished testimony from terminally ill patients or their families.

The laws would cut the FDA out of the process, at least in terms of a single, terminally ill patient. The decision would be left entirely in the hands of the patient, the doctor and the drug company.

Whether these laws would withstand a court challenge is an open question. Typically, state laws cannot supersede federal statutes. Even if the laws don’t withstand a challenge, advocates say, they may serve a valuable service in spotlighting the issue.

“(A lawsuit) wouldn’t be all bad news because it would further elevate this issue in the public arena and put pressure on Congress and the FDA to make this change and literally save thousands of lives every year,” said Frank Burroughs, head of the Abigail Alliance for Better Access to Developmental Drugs, which he founded 13 years ago after his 21-year-old daughter died of cancer.

So far, only Colorado’s law has taken effect, a little over a month ago. The Goldwater Institute, a conservative nonprofit that defends states’ rights,  created the model legislation for the new laws.  While it has received word of interest, no patients have yet formally tried to receive an experimental drug under the new law, the institute said.

FDA’s Slow Process

Under FDA rules for drug testing, Phase One, the first studies to use human subjects, is quite limited in the number of patient participants (typically 20 to 80, according to theFDA website on the drug approval process). This first step is intended to determine the drug’s most frequent side effects and how the drug is metabolized and excreted.

If Phase One doesn’t reveal unacceptable toxicity, the drug can be approved for Phase Two trials, where the emphasis is on testing the effectiveness of the drug. This stage can involve a few dozen to 300 patients. If the drug passes muster, it goes onto Phase Three, which gathers additional evidence on safety and effectiveness and involves from several hundred to 3,000 subjects.

In the Leclaire brothers’ case, those selected for the trial had to still be ambulatory most of the time, but with the expectation that their walking days would end within a year, said Jenn McNary, the boys’ mother. Max fell down occasionally, but he still didn’t need the wheelchair most of the time. Austin no longer qualified.

So even as Austin has watched Max get stronger from the drug treatments, he wonders what motor skill he will lose next. And while he hopes s one day to earn degrees in mechanical engineering and zoology, he is aware that those with his condition rarely survive their twenties.

“I’m glad that Max has (the treatments), and he’s proving that it does work, and I should have it, too,” Austin said by phone from home. “But it’s also unfair…. I’m just really upset that the FDA won’t approve the drug, and it’s their fault that someone might die.”

The FDA has taken no official position on the new laws. “While the agency is supportive of patients’ access to experimental new treatments, the FDA believes that the drug approval process represents the best way to assure the development of safe and effective new medicines for patients,” an FDA statement said.

Although there are already provisions in place that allow for expedited approval of drugs and to make certain experimental drugs available to individuals prior to final approval, the Goldwater Institute insists that even those procedures take too long for a person whose time is running out. “A lot of patients don’t have five or six months” that those procedures take, said Victor Riches, a Goldwater spokesman.

The FDA  said it receives about 550 applications a year from drug companies to supply drugs to individuals before final approval and agrees to nearly all of them.

Rare Diseases

But that doesn’t account for patients who have been turned down by manufacturers, such as Holly Singh, a Texas second grade teacher whose 14-month-old daughter Harper has spinal muscular dystrophy, which leaves her incapable of picking her head up, crawling or rolling over. Without help, her life expectancy is quite limited.

Singh applied to Isis Pharmaceuticals, developer of the promising drug, ISIS-SMN-rx, which is soon to enter Phase Three clinical testing, for early access to the drug. In turning down her request, Isis chairman Stan Crooke raised the possibility that granting it could have prolonged the overall testing program and delayed the drug’s approval for other patients. He also said that all the safety concerns had not been fully addressed.

Singh’s correspondence with Crooke demonstrates her desperation.  She wrote, “What kind of mother would I be if I just told my child, ‘I’m sorry that there’s a drug, but unfortunately you can’t have it.  You just need to suffer a little while longer.’”

While sympathetic to the situation of individual patients, the pharmaceutical industry has been far from enthusiastic about the right-to-try laws.

“We have serious concerns with any approach to make investigational medicines available that seeks to bypass the oversight of the Food and Drug Administration and clinical trial process, which is not in the best interest of patients and public health,” said Sascha Haverfield, vice president of scientific and regulatory affairs for thePharmaceutical Research and Manufacturers of America. He suggested that medical providers, the pharmaceutical industry and FDA should seek ways to improve access to clinical trials.

Critics of the new laws contend that Phase One trials are too limited to assure that a drug can be safely used. “Safety (in Phase One) is tested in only the crudest way you can imagine, making sure it doesn’t kill people,” said David Gorski, an associate professor of surgery at Wayne State University and the editor of the Science-Based Medicine blog, which has been critical of right-to-try laws. Even for terminally ill patients, Gorski argues, the risks are too great based solely on Phase One trials.

“They say it couldn’t get any worse.” Gorski said. “Well, yes, it can get worse. If there’s anything worse than dying of a terminal disease, it’s added suffering and potentially cutting the time you have left.”

According to a January article in the journal Nature Biotechnology, only 16 percent of investigational drugs that complete Phase One clinical trials ultimately gain FDA approval.

Still, patients and families say they feel that they should be free to take the chance given that the alternative is death. “I should be able to take the risk of whether or not it would help,” said Austin Leclaire. “It’s my life.”

Proposed laws on experimental drugs stir debate

BY STEPHEN FEE PBS Newshour Weekend

This May, Colorado’s governor signed the nation’s first ”right to try” bill, which allows terminally ill patients to try unapproved — and potentially dangerous — drugs outside of clinical trials and without approval from federal regulators.

Missouri and Louisiana have passed similar statutes, and Arizona voters will vote on their own version this fall.

For the NewsHour Weekend broadcast, we profiled the Missouri State Representative Jim Neely who introduced that state’s bill and his daughter, who is fighting a deadly form of cancer.

Neely is backed by Phoenix-based Goldwater Institute and by patients and families who have lost relatives to diseases, but the proposed measure is not without controversy. While FDA remains neutral in the legislation debate, there are opponents to these type of laws.

To get more context about the debate surrounding “right to try,” I spoke with Julie Rovner of Kaiser Health News.

AbledCauses Update Banner

March 13, 2014 : A Bittersweet Victory

UPDATE FROM JULIA MEDEW, Health Editor – Sydney Morning Herald

 

AbledCauses- photograph of the Auden family  sitting on the step of a wooden shed painted with pastel light blue and  yellow vertical stripes. From left to right they are father Nick Auden, 7 year-old son Locky, 5 year-old daughter Hayley, while mother Amy holds their year old son Evan. The photo is by Catherine Sutherland.

 

In cruel timing, Merck announced this week that it was launching an “expanded access program” for its PD-1 drug Lambrolizumab (or MK-3475) in the US for people “who have serious or immediately life-threatening illnesses for which no comparable or satisfactory alternate therapies are available.”

A spokeswoman for the company said it planned to make the scheme available to Australian patients “at the earliest possible time” but did not say when that could be. At the moment, only 175 patients with melanoma are receiving the drug in clinical trials.

Mr Auden’s bereaved wife Amy Auden welcomed the program but said the timing was “absolutely devastating”.

“Words cannot express the emotion I feel… The people at Merck said that they did not want to ‘play God’ by giving the drug to Nick (they were concerned about not having enough of the drug for everyone with stage 4 melanoma), however by denying Nick the drug, they in effect did just that,” she wrote in an email.

“Every minute of every day I am reminded that Nick is not here and I am widowed at 38 with 3 young kids. Right now, however, I am trying to focus on the fact that were it not for the campaign, a compassionate use program for the new melanoma breakthrough drug would not be a reality for others.”


Read more at the Sydney Morning Herald
 

AbledCauses Update Banner

November 22, 2013 : THE SADDEST UPDATE

 

The man known around the world as ‘Locky’s Dad’ has lost his battle with cancer. Nick Auden died on November 22 at the age of 40.

 

Photo of Nick Auden. He is sitting in front of a window in a tall office building dressed in a suit and dress shirt with an open collar. He has sandy blonde hair cut neatly and is smiling at the camera.

 

 

He leaves behind his wife,  Amy and children 7 year-old Laughlin (‘Locky’), 5 year-old Hayley, and 1 year-old Evan.

The story of his battle with Stage IV melanoma went viral after his wife Amy started a petition at change.org to garner support and put pressure on pharmaceutical giants Bristol Meyers Squibb and Merck to give Nick special access to a couple of experimental ‘PD-1’ drugs that were showing great promise that were in clinical trials. Over 525 thousand people signed the petition.

And even though the U.S. Food and Drug Administration (FDA) said Nick could use the drugs if one of the companies gave him access but they refused saying they were only available to people in clinical trials.

Despite the PD-1 drugs lambrolizumab and nivolumab offering groundbreaking results, a series of small brain tumours prevented Mr Auden from initially qualifying for clinical trials of the wonderdrugs. 

 

This past July, Nick was finally accepted for a trial only to suffer a partial blockage in his bowel, which again ruled him out.

 

Following a funeral in the United States, Amy and the children returned to Australia for a memorial service there. She told the Herald Sun News in Melbourne, that, returning home without her soulmate was the toughest thing she had ever done.

“It’s really difficult coming back to Melbourne because I come here without Nick. We met here, and it is just so hard for me to come to terms with. Locky is absolutely devastated. When he asks me the really difficult questions, like who is going to teach me football … I am hoping that with our friends and family together we can show Lachlan what Nick would have suggested and how he would have guided him. Hayley is too young and she is just asking me ‘when is daddy coming back’.”

 

Nick Auden with his son Lachlan in combine harvester in happier times.

 

While Evan will be too young to remember his father, Amy has thousands of messages from people inspired by their campaign that she will treasure to show her children what a great man their father was.

With her children settled in the United States,  Amy said it was too early to make a decision about whether her family would return to Australia in the long-term. But she has promised to continue her husband’s legacy and pressure pharmaceutical companies to improve compassionate access for desperate patients.

All of us at Abled.com are heartbroken by the news and offer our heartfelt condolences to Amy and her children. We will keep this post current on our site as a tribute to Nick’s courage and perseverance and will join the fight to lobby for compassionate access to experimental drug treatments.

The Original Post

AbledCauses story banner shows Nick and Amy Auden of Lone Tree, Colorado and their three young kids with the headline: Save Locky's Dad: Dying Dad Pleads For Unapproved Drug.

 

 Disqualified from a clinical trial, Nick Auden fights for ‘compassionate’ use of PD-1

 

“When you’ve been given a terminal diagnosis, you’re prepared to accept a drug that’s 50 percent effective. Safety concerns don’t really figure in the same way.” Those words, spoken by Nick Auden in an interview with ABCNews.com, sum-up his fight to get access to what’s being called a new ‘wonder drug’.

The 40 year-old father of three was diagnosed with Stage 4  melanoma in September of 2011. On July 2nd of this year he was admitted into a clinic trial for a drug called PD-1 that helps a patient’s own immune system shrink cancer tumors for good. But a blocked bowel the very same day sent him to the ER and out of the trial.

Now, he and his wife Amy are fighting for him to become an individual case study under compassionate-use rules which can give people access to experimental drugs that haven’t passed FDA approval outside of a clinical trial, and they’ve launched a petition campaign at Change.org to lobby pharmaceutical giants Merck and Bristol-Meyers-Squibb to provide the treatment.

The Audens’ 7 year-old son Lachlan, nicknamed “Locky,” is included in a video on the “Save Locky’s Dad” website asking for people to support his dad. The “Save Locky’s Dad” campaign has skyrocketed since launching two weeks ago with the goal of reaching 150,000 signatures. Once it attained that goal, the Audens raised it to 200,000. 

Now with more than 258,000 signatures, the goal is 300,000 and as more media outlets share the story, it’s quite likely they’ll reach and even surpass that goal very soon.

Watch the ‘Save Locky’s Dad’ video below:

 

 

Read more of the interview with ABCNews.com |  SIGN THE PETITION HERE

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