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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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.

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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
 

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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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AbledCauses-Ben-Pierce

POSTED ON July 21st  - POSTED IN AbledCauses, Uncategorized
AbledCauses banner shows the silhouettes of peoplecampaigning for a cause with their arms outstretched against white to fushia light effects in the background under the AbledCauses icon which consists of the outline of a heart in the middle of the gradient green rounded triangle that makes up the Abled icon.
AbledCauses Post Banner shows a video still of Ben Pierce sitting in a wooden chair and covering his face with his hands as he breaks down crying after he tells a reporter he doesn't want to go blind. The 9 year old is slowly losing his sight because of complications from his premature birth. Ben has dark brown hair and a narrow face with dark-tinted glasses. He's wearing a blue and white short-sleeved shirt with vertical and horizontal blue and white stripes with blue jeans. The headline reads: Abled Causes: Ben PIerce: Help fund a visual bucket list for 9 year old boy who is growing blind.

UPDATE: Ben Gets To See The Northern Lights

Ben Pierce, the nine-year-old Dallas boy who is slowly going blind can strike one item off his bucket list of amazing things to see before he loses his sight – the Northern Lights – also  known as the Aurora Borealis.

Ben and his family made the 3,000 mile trip to Alaska to see the celestial phenomenon and to also ride on a dog sled with Iditarod racer Aliy Zirkle.

Ben described the Northern Lights this way, “It’s really beautiful and pretty. It’s like watercolors going across the sky.”

Next on the bucket list, a trip to Turner Falls, Oklahoma to see Native American dancing, and off to London and Paris in 2015.

Photo by RonnMurrayPhoto.com shows 9 year-old Ben Pierce standing with his arms outstretched with the Northern Lights casting a green hue in the sky in the background. Ben is wearing a blue parka with and orange stripe and ivory hood. He wears tinted glasses and is smiling at the camera. Click here to go to RonnMurrayPhoto.com

Each Growth Spurt Causes More Damage To His Retinas

Photo on the left shows Ben Pierce as a tiny infant in the hospital born 4 months premature, small enough to fit into one adult hand. The second photo on the right shows Ben with his eyes closed and his mother Heidi smiling behind him as he's about to see one of his wishes, Van Gogh's painting of haystacks at the Dallas Museum of Art that opened early to let Ben have a private showing.

Ben Pierce has become an Internet sensation. His arrival into this world nine years ago already made him something of a sensation because he was born four months premature, weighing only one pound – six ounces. 

No one expected Ben to survive, and he was so premature that his eyelids were still fused shut. But he beat the odds, all except for his eyes. Because Ben required eye surgery, the procedure that prevented his retinas from detaching also resulted in some scar tissue. The consequence of that is that as Ben continues to grow, the scar tissue doesn’t – it won’t stretch – resulting in a progressive loss of vision.

So, before Ben’s vision is completely gone, his parents are trying to give him as many visual memories as possible – and they’ve helped him put together a visual “bucket list”. And, as you can imagine, the story’s gone viral on social media.

Here’s a report from WFAA TV in Dallas, Texas about how viewers have already been responding to his wish list. Among those who have answered his wish list are Weird Al Yankovic, one of Ben’s favorite artistHe’s also received offers from SeaWorld, Legoland in Grapevine, California and an offer to travel to a Mexican beach to see the sand and the ocean.

Updates from Ben’s mother Heidi’s blog:

 

Update: – have you heard of this place?? Mardi Gras World!)

Update: I feel bad, because I vetoed some of Ben’s wishes and he then thought some others weren’t realistic and didn’t share them with us (like Germany and snorkeling.) So I told him DREAM BIG and tell us anything and everything! Okay, but I’m still not willing to do Antarctica. :)

So if you were losing your eyesight what would YOU want to see? We love suggestions! Truly, please share your ideas – even if we can’t make the trip, we can show him online the places you think are best. Leave a comment and tell us what Ben should see!

Ben’s Wish List
c/o Hobby-Q
PO Box 2107
Lake Dallas, TX 75065-2107

Ben and all the kids LOVE postcards so if you want to send one from your hometown or your vacation spot then they would be thrilled. It’s the next best thing to him getting to see those places in person.

Update II: We’ve been receiving a LOT of messages asking if we have a donation page set up for Ben. We’ve not set anything up, but two donations pages were set up in Ben’s honor which was so kind:

InspireMore.com

GiveForward.com

 

PLUS: This Update on Weird Al from Ben’s mother Heidi’s blog:

I had posted on Ben’s wish list that he hoped to see a Weird Al concert, and we had found one in Texas this fall but tickets were more than we could manage. However, my research skills apparently failed me because the only place I could find ticket prices listed had them at $200. I was informed by Weird Al’s very devoted fans that this information could not possibly be accurate and they were correct! I admit I was wrong. :)

Which means that while I thought making Ben’s wish come true was going to be tricky, thanks to new and accurate information WE CAN MAKE IT HAPPEN!!!! Weird Al has some seriously committed fans and they want to share the joy with Ben and had been contributing to make it happen. We’ve not told Ben, we’re going to come up with a fun way to surprise him with the news. I found the ACTUAL ticket prices now online (apparently the other link was not a reputable source) and the plan to is head down to San Antonio (hitting Austin on the way) and have an incredible, glorious, Texas sized adventure. We’ll manage to make the Alamo AND Weird Al wishes come true in the same week? I don’t know if Ben will be able to handle the excitement!

I’m really, really happy that I was wrong about the tickets. :)

Oh, and did I mention that when we visited with Janet St. James for a follow up (that’s the video) that she shared Weird Al’s people had been in touch? Oh yes, they had! More on that exciting surprise to come…

PLACES WE WANT HIM TO SEE

These are places we’ve not necessarily told him about/shown him online yet but we’re going to try and take the kids to see.

– Farmers Branch Historical Park because of the old pioneer buildings and general store. (Bonus, looks like it’s free??)

– Similar idea, the Log Cabin Village in FW.

– The Kimball for more art in FW but also for the building itself, suggested by his architect uncle.

– Fort Worth Water Gardens – I hear they are beautiful at night.

– The FW Modern, because it’s gorgeous and because when B was tiny and only home a couple months my sister babysat our big kids and Kit and I took a visit there with Ben and oxygen tank in tow for Kit’s bday. We stayed very isolated so no one would expose him to any bugs! We’ve not visited since, shame on us. (Plus I appreciate when the wishes are free, much easier to make them happen!)

– Bass Hall because someone said you can do a free tour and he can just see the beautiful building.

– Central Park in Frisco (another suggestion for lovely spots to take him.)

– Dallas Farmers market, big and fantastic! I think our little food lover would enjoy it.

 

The ones Mom already vetoed due to practicality/finances:

– a video game company (Nintendo in Japan – ha! Fun, but far.)

– The Great Wall of China

– Mount Rushmore (too long a drive)

– the Sistine Chapel

– Death Valley (too hot)

– Leaning Tower of Pisa

– Roman Colosseum

– New Orleans “Mardi Gras stuff” (not a chance! New Orleans – sure, but not at Mardi Gras.  

 
Photo shows Ben Pierce and his mother Heidi from behind as Ben sees Vincent van Gogh;s painting of haystacks at the Dallas Museum of Art.

In the photo above, Ben gets one of his wishes fulfilled. The Dallas Art Museum opened early so that Ben and his family could have a private viewing of Vincent van Gogh’s famous “Haystacks” painting.

Ben was so moved by it, that it brought tears to his eyes.

AbledCauses - photo shows Ben Pierce hugging his mother after being taken to see Vincent van Gogh's famous painting 'Haystacks' at the Dallas Art Museum.

DONATE TO BEN’S WISH LIST 

ONLINE

AT

GiveForward.com

Photo from thadenpierce.org shows Ben Pierce sitting with his mother and 5 siblings on a sunny day with green trees in the background.
Abled Causes photo shows nine-year-old Ben Pierce standing outside on a sunny day with a church and a tall bushy tree behind him. Ben has brown hair and his wearing a yellow t-shirt and tinted glasses. He is holding the grip of a walking cane in his left hand and is smiling at the camera. Click here to go to the give forward campaign that is raising money for his bucket list.
AbledCauses Graphic shows the address for Ben's Wish List if you want to send a donation or an idea for his visual bucket list care of Hobby-Q, Post Office Box 2 1 0 7, Lake Dallas, Texas. Zip code 7 5 0 6 5 - 2 1 0 7.

Walt Disney World Is Booked For November!

From the Give Forward Campaign raising money for Ben’s Bucket List.

Click here to go the the Campaign page.

This note comes from the Campaign Team Leader and Fund Manager, Melissa Ulrich:

I am thrilled to share with you that today Heidi, Ben’s mom,  booked their family plane tickets and I booked their Walt Disney World portion of Ben’s wish list last week! They are keeping this a surprise from Ben for a little while longer but Heidi was full of emotion when she bought the tickets.

They chose to go with Old Key West so they could have a two bedroom villa so all 8 of them can be in the same room. As I have mentioned before, one of the most remarkable things about working with Ben’s family has been that they are truly a modest family.

Your generosity could have led them to choose a resort that was much more expensive. They opted to choose a really nice resort for this once in a lifetime trip for Ben but not splurge completely on the resort alone so that more of Ben’s wishes can be granted. We are going to add a few days to their trip to Universal so that Ben can do all of the Harry Potter attractions as well while they are in Orlando. More details on that portion a bit later.

November was the chosen month. Walt Disney World will already be decorated for the holidays and it is extra magical during that time. I know Ben is going to be amazed at the sheer size of the Christmas trees!

Thank you again to all that are making Ben’s wish list a reality. He is such a sweet boy that lives life to the fullest. It is very humbling to get to be a part of this incredible wish list being granted. Thank you for making this all possible for Ben and his family. They are extremely grateful.

Melissa

Ben’s Vision Wish List (non-local):

From Ben’s mother’s blog (Heidi Thaden-Pierce):
– Doctor Who & Harry Potter studios in England: I said maybe someday… Our dream is to take him spring 2015 but we don’t want to get their hopes up too much as plane tickets alone look like they’ll run $10,000+ for the family. Ouch. But we’re working on it!!

– Also in England: the Globe theater (we’ve read several of his plays in kids’ versions), London Eye, Big Ben (of course! Ben!) then the Roman Wall (he read about it), Van Gogh’s sunflower, and Tower Bridge.

– While we’re over there anyway (and he’s dreaming big) he added Paris, to see the Louvre & Eiffel tower. Those were his two main requests but I’m sure we would go see more! (I had a dream about this – you can read about it here.)

– the forest, specifically the Redwoods (I really want to make this one happen even if it’s a 30 hour drive. I’ve heard how stunning it is to be up close and see and touch them. I just won’t think about that drive…)

– Los Angeles (our oldest was born there) to see the beach, and he said he’s heard there’s “This Disneyland thing that might be fun.” (HAHA! That might be fun… I’ve never been to Disney, I teased him that maybe it’s not that fun.) We could hit the beach on our way to the redwoods on that hoped for someday trip to California. (We did visit Galveston beach and it was wonderful! But we were told we really should take him to the ocean.)

– the Grand Canyon

– skiing (I’m nervous about this one but we’ll try to make it happen with a helmet. And bubble wrap.)

– snorkeling, maybe in the Florida Keys?

– The northern lights, he was fascinated by the pictures I showed him! (Where can we make this happen that would be relatively inexpensive? Because we can’t all fly to Iceland.)

– Frankfurt, Germany (He says he wants to see where I was born – I didn’t know he wanted to see it until today! Oh, and because Kinder Eggs. My parents sent them some when they use to live there, and he’s not forgotten them.)

– DC: Lincoln Memorial & the white house (We watched some of MLKs speeches and he was fascinated, both by the man and the memorial.)

– Parthenon in Greece (There is one in Kentucky! Not Kentucky, Tennessee! The friends we have near there are in KY, thus my confusion. And that’s WAY closer than Greece! We can hit it on our way to DC someday. I know it’s not the same, but we’re working on a budget. :) )

– The giant statue of Athena (also a version in Tennessee)

– a candy factory (There is one in Denver with free tours we hope to visit in May.)

– the desert (Arches National Park during Utah trip in spring.)

– the mountains (Colorado/Utah trip in spring)

– New York City (Six kids in NYC makes me nervous, but he said he really wants to see the Statue of Liberty and the Empire State Building. He’s a Percy Jackson fan. I’ll try to be brave and see if we can work towards this one. Someday.)

– A moose, but I think he’s kidding because he’s laughing really hard.

– Alaska (maybe to see a moose and northern lights??)

– The Food Network kitchen with all the cooking people. (He LOVES cooking shows, his “most favorite” is Cupcake Wars, but he also loves Worst Cooks in America and Iron Chef. And Chopped, and… he kept going, I just stopped typing.) :)

– Albuquerque, because of the Weird Al song. (Kit is the reason our kids are Weird Al fans, for which I tease him whenever they burst into simultaneous song in the back of the van – we’ll catch Albuquerque on our way back from Utah.)

Local Wishes:

– Legoland (Apparently this is a favorite spot for MANY people because we’ve received several emails saying they would sponsor this trip – THANK YOU for offering to help make this wish come true, we really appreciate it. Legoland contacted us right before the show aired and they’ve invited our family to come visit so this wish will be fulfilled!)

– Fort Worth zoo, because even though we took him to the Dallas Zoo he heard about the FW one and wants to see their tigers.

– Also that side of the metroplex, theFort Worth Museum of Science & History because he heard there was more than one science museum in the area and he adores the Perot.

– Fort Worth Botanical Gardens because he heard about the koi pond! I’ve not been in the Japanese gardens but I hear they are gorgeous, and the closest we may get the kids to Japan.

– Great Wolf Lodge waterpark in Grapevine, after hearing about some friends staying there. I let him watch the videos of riding inside the watersides and he thought that looked so cool! (Downside, you cannot get into the waterpark unless you are staying at the hotel. We’ll see…)

– ice skating (We tried on a fake rink, it didn’t go well. He wants to try on real ice.)

– a waterfall (We’re hoping to do a day trip to Turner Falls.)

– Children’s Aquarium in Fair Park, because Ben asked if he could teach sea life and we said we didn’t think it was possible. Apparently there you can!

– a cave (We’re about 3 hours from Inner Space caverns. Kit also wants to show him Carlsbad Caverns.)

– The Alamo & Riverwalk since we’ve been studying Texas for our homeschool (I bet we could combine this with the caverns above.)

– Antarctica, which is not happening but someone said the ICE! exhibit at Gaylord may be a close second? :) They said it’s incredible and he may get an Antarctic feel, so we’ll check on tickets in December.

– Also in December, Christkindlmart! We can’t get to Germany but I’m so excited to share that with the kids, one of my happiest childhood holiday memories. I told him about the twinkling lights and how beautiful the booths are at night.

– The Nutracker ballet, they watch the video each year but this December I want to take the older ones to see it live.

– Africa (he said the Sahara, the pyramids, and a safari) A friend suggested instead we look at Fossil Rim park for a North Texas version of a safari.

– The Dallas Aquarium (This one is in the works!)

– Heard Museum & Wildlife Sanctuary (I think our Perot pass gets in some of us for free, checking.)

– a Weird Al concert, (I have been informed that the ticket prices I saw quoted online were WAY off, which Kit had already suspected but I swear, I was checking everywhere!:) We heard the tickets were actually priced within our budget so I told Kit we are going to San Antonio!! I think the show is mid-October, and we’re going to combine a few of his wishes and it is going to be an epic journey of Texas fun!! I am so excited!!!!!)

– sand dunes (We’re hoping to visit Monohan State Park as the Sahara, his first request, is a bit far.)

– A bakery that makes yummy food, “mostly croissants and pastries.” He also wants to see how people decorate fancy cakes. We’ve not contacted them yet but someone suggested Ravelin’s Bakery may be able to let him see part of the baking process.

– Also food related, he wants to see how ice cream is made. He is so my child…

– use a microscope to see tiny things

– Chuck E. Cheese: Hmm… this seems hunger driven rather than vision related. (Ben defended this wish and said the older two kids went and talked about all the cool things they saw so he wants a turn to go!)

– a bike store (The inside. As opposed to the outside? He wanted me to include that – the INSIDE of a bike store.)

– a river

– a toy factory (He says he likes seeing things made.)

– Prairie Dog town

– Other animals: penguins, fish, turtles AND tortoises, sharks (like hammerhead sharks), macaws (he had to spell that one for me.) Parrots, hedgehogs, a kiwi (the bird, NOT the fruit.)

– A place where they make movies or shows, like Cartoon Network or a news show.

– How they make tortillas. (This boy loves food, and one of his vision helpers is teaching him “Cooking without Looking.” Thus all the food related wishes.)

– a comic book store (Hooray, an easy one!!!)

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AbledCauses-The-Oso-Mudslide-How-To-Help-Survivors

POSTED ON March 27th  - POSTED IN AbledCauses
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AbledCauses Post banner shows an American flag flying on a post sticking out of the collapsed roof of a home that was crushed and carried away by a massive landslide in Oso, Washington. The bare mud cliff created by the slide is seen in the distance. The headline reads: AbledCauses: The Oso Mudslide: How to Help Survivors of the Washington State Mudslide Disaster.
AbledCauses - Aerial map shows the community of homes outlined in red scattered around the the base of the green tree-lined ridge before the site of a previous partial slide completely collapsed from a what's believed to be the subsequent consequences of that previous slide, a base saturated from recent heavy rains and a recent earthquake.

An Outpouring Of Support For A Community Reeling From Unspeakable Disaster

 

The crushed rooftop in our headline banner belongs to Mac McPherson. The house that the 78 year-old and his wife Linda lived in was directly in the path of the equivalent of 17 football fields filled 100 feet deep with mud and debris slamming down at over 100 miles per hour in a matter of seconds.

 

You might call Matt one of the lucky ones. On the one hand he survived. But on the other hand he, like so many in this small community in and around Oso and Darrington, Washington has suffered heartbreaking loss.

 

He and his wife Linda were sitting in their living room reading the newspaper on the morning of Saturday, March 22nd. In an instant, everything was lost . . . including his beloved Linda.

Like The Families Of The Missing Malaysian Airlines Passengers – Survivors Caught Between Hope And Despair 

 

It’s a community where people grieve as much for their neighbor’s losses as they do their own from the massive trail of destruction. Many are also caught in a limbo similar to the families of the passengers aboard missing Malaysian Airlines flight MH 370 – keeping hope alive for missing relatives and friends while fearing the worst.

 

It’s a tightrope walk of emotions that’s even difficult for the first responders who’ve been working around the clock in extremely dangerous conditions because some of them have lost relatives and everyone has lost friends.

How To Get Help & How To Give Help

 

Here is a list of ways to contribute to the disaster relief or to seek help if you live in the area and have been affected by the slide. A number of organizations have been responding, and people have been starting crowdfunding campaigns on social media. Some people have even commented that it’s better to directly contribute to bank funds that have been set up to deliver 100% of the funds to the people in need, as opposed to the Red Cross, which one person claimed was only providing a maximum of $600 per family.

 

County officials are asking people to call 425-388-5088 to report anyone who has been found or is still lost. They ask that people call even if they have reported the information elsewhere and ask that they then send photos of missing friends or family to demcallcenter@snoco.org. If you are directly affected by the landslide, you can also register or search for others on the Red Cross website safeandwell.org, in addition to calling the Snohomish County official number.

 

Local officials are asking people to refrain from trying to help on the scene, as it remains active and dangerous. The Red Cross is accepting monetary donations but asks that people not bring donations of items to shelters. You can donate by texting “RedCross” to “90999” or calling 1-800-REDCROSS, or donate online at the Northwest Response page.

 

Washington State Governor Jay Inslee has launched a mudslide relief campaign which allows you to donate to one of three organizations helping with the relief effort.

 

The Cascade Valley Hospital Foundation has also established a fund for landslide victims. Click  here to make a donation and 100% of the funds raised will go to local families and individuals affected by the mudslide.

 

Shelters are open at Post Middle School in Arlington and at the Darrington Community Center. Anyone seeking information about reunification, evacuation and shelters should also call 425-388-5088 and check the FAQs on the Snohomish County website.

 

A landslide information and relief effort Facebook page has also been set up with information on relief efforts and how residents can find resources.

An animated .gif file shows a before and after aerial photo of the area affected by the massive mudslide in Washington state.
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From King5 News:

Monetary donations are pouring from companies and organizations from around the region following the landslide in Oso.

Wednesday, Boeing announced that $100,000 from its employees and the company would go to Cascade Valley Hospital, United Way of Snohomish County and the Snohomish County chapter of the American Red Cross.

The Employees Community Fund of Boeing Puget Sound also said that it would match individual donations up to an additional $25,000.

Arlington Mayor Barb Tolbert said two local tribes had also donated. The Stilaguamish Tribe gave $100,000 and Tulalip Tribes made two donations totaling $150,000. They gave $100,000 to Red Cross of Snohomish County and $50,000 to the local fund at Union Bank.

Grocery chains Fred Meyer and QFC said 100 stores would be collecting cash for the Red Cross using register coin boxes or check stand donations of $1 or $5.

Alaska Airlines added another $25,000 in donations for the Red Cross to assist with disaster relief.

 

From The Everett Herald Tribune:

Where to donate


  • Red Cross: If you wish to help victims of the Oso mudslide, cash donations are preferred. The American Red Cross is no longer collecting items. Go to the Red Cross of Snohomish County atwww.redcross.org/snoco to donate. People also can text “RedCross” to 90999 to make a $10 donation.
  • United Way has established a community-wide recovery fund to assist those affected by the mudslide. Information on how to donate is at www.uwsc.org. Checks may be sent to: United Way of Snohomish County, Attn: Finance Dept., 3120 McDougall Ave., Ste. 200, Everett, WA 98201.
  • The Salvation Army is collecting donations for local disaster relief efforts. Donate by phone at 800-725-2769, online atwww.salvationarmynw.org or by mail to the Salvation Army, Northwest Divisional Headquarters, 111 Queen Anne Avenue N. #300, Seattle, WA, 98109. Designate your gift as “disaster relief.”
  • The Cascade Valley Hospital Foundation is a local organization that is giving 100 percent of donations directly to those affected. The Cascade Valley Hospital in Arlington treated several victims in the aftermath of the mudslide. Donate at this site or by phone at 360-435-2133, ext. 7805. You can drop off/mail donations to 330 S. Stillaguamish Ave. in Arlington or donate to the fund through an account at Union Bank in downtown Arlington, 525 N. Olympic Ave.
  • The Coastal Community Bank is accepting donations for slide victims at all branches: Darrington, Camano Island, Everett, Monroe, Stanwood, Sultan, Silver Lake, Smokey Point, Snohomish and Whidbey Island.
  • A special Mudslide Relief Campaign has been organized by the Community Fund Drive, state government’s workplace giving program that invites state and higher education employees to give to the charity of their choice. For information, go to www.cfd.wa.gov.

 

 

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AbledCauses-John-Furniss-Help-Blind-Piano-Restorer-Buy-Adaptive-Shop-Tools

POSTED ON January 21st  - POSTED IN AbledCauses
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AbledCauses Post Banner shows John Furniss at work, restoring a grand piano. The headline reads: John Furniss Piano Service: Help blind piano restorer to buy adaptive tools shop.

A Story of Resurrection and Redemption and A Love of Fine Craftsmanship

 

The resurrection part of this story is fairly straight forward. A 16 year-old boy tries to commit suicide. He fails and lives.

 

But there is a price to pay . . . he is left totally blind.

 

The redemption part of the story is more complex because it weaves through layers of the hope, marginalization and frustration that many people with vision-loss often encounter when they try to find a way to make a living in the face of a life-altering disability.

 

Many find themselves wrapped in a suffocating social cocoon of judgmental and factual ignorance and indifference and become fatally overwhelmed by it all. But some have the good fortune to encounter good and decent people who understand that accessibility and adaptability are often all it takes to take the dis out of disabled.

 

It’s the latter path that John Furniss has been fortunate to walk. At 16, life seemed  just too much to handle. Now 32, he says it really wasn’t, when he looks back on it. 

 

The path forward wasn’t easy. Despite studying woodworking in Utah, he encountered the marginalization and ignorance and couldn’t find a job. Then he heard about a school in Vancouver, Washington that would soon change his life. It was the Emil Fries School of Piano Technology for the Blind, now operating as the School of Piano Technology for the Blind.

 

John moved to Vancouver, studied hard, and graduated last year. During his studies he was fortunate to meet Rick Patten who mentored at the school and who owns and operates a piano restoration shop. Rick is one of those people who understands the concept of ‘evening the playing field’ through accessibility and adaptability, because he’s invented one-of-a-kind shop tools for people with varying degrees of vision loss to work with in the restoration of pianos.

 

For John Furniss, it has become a full-circle experience, as his resurrection and redemption enable him to offer the same to the worn and sound-weary instruments that his alternate senses allow him to lovingly heal, refurbish and recalibrate to regain their purpose in life.

 

AbledCauses photo by Anni Becker shows John Furniss sitting on a wooden stool in the piano restoration shop with a rack of tools above the workbench to his right with an old upright piano about two feet in front of him. John has brown hair and is wearing bluejeans and a brown t-shirt.

 

Now, the next chapter. Rick Patten is ready to retire, and John has what he calls ‘a once in a lifetime opportunity’ to pick up where Rick is leaving off by purchasing his shop and the adaptive tools. To that end he’s launched a crowdfunding campaign on indiegogo.com that runs to February 19th and he’s hoping to raise $15,000.

 

There’s a wonderful article written by Eileen Cowan at the Vancouver Vector about John’s story. And below we feature a couple of videos – one about the fundraising campaign and the other, a profile on John done by KGW TV.

 

We hope you will help John’s journey of resurrection and redemption continue by helping him to become a small business owner.

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Abled Public Service Ad for World Access For the Blind shows a silhouette of its Founder and President Daniel Kish walking with a long cane against a gradient orange half sonar wave positioned in front of a reflecting grey sonar wave with the subtitle 'Our Vision Is Sound'. Click here to learn more about echolocation for the blind.

 

Abled Public Service Ad for The Seeing Eye Guide Dog Training School in Morristown New Jersey showing a German Shepherd sitting in the sun on a green lawn with a black lab, a golden lab and a golden retriever with the caption 'Independence and Dignity Since 1929. Click here to visit their website.

 

Abled Public Service Ad for the Canadian National Institute for the Blind's (CNIB) Night Steps program. The the white text on a gradient blue black background to simulate the night sky reads: CNIB Night Steps brings together family, friends, and community members for a fun 5K night walk that raises funds for CNIB’s vital programs and services for people who are blind or partially sighted, such as independent travel skills. Enjoy an evening of live music, a BBQ and exclusive party favors!. Some of the stars in the night sky of the design are punctuated with braille dots. Click here to go to the CNIB website to learn more.

 

AboutAbled link Banner shows Abled Co-Founder Laura Meddens looking out at the seaside at sunset in Curaçao with the text Laura Meddens: An Abled Vision For Global Accessibility, Inclusion and Equality. Click here to go to the AboutAbled page.
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AbledCauses-Walking-With-The-Wounded

POSTED ON December 11th  - POSTED IN AbledCauses
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AbledCauses Post Banner shows the logo for Walking with the Wounded South Pole Allied Challenge 2013 which shows an illustration of a wounded vet with a prosthetic leg cross-country skiing towing a baggage sled and wearing a backpack. Other Ullustrains show the Team UK banner with a dark gradient blue over a Union Jack flag Team US with an American flag and Team Commonwealth with the Canadian Maple Leaf flag and the Union Jack. The headline reads Walking with the WOunded: Prince Harry on Polar Tek Supporting Ex-Service Members.

UPDATE: Prince Harry And Trek Teams Reach The South Pole

 

The UK charity organization Walking With The Wounded has announced that the members of their South Pole Challenge 2013, including Prince Harry, reached the South Pole, Friday, December 13 at 13:25 GMT (8:25 a.m. EST).

 

The Prince, who has served in Afghanistan as an Army Apache helicopter pilot, previously spent a number of days trekking with wounded servicemen on a similar expedition to the North Pole in 2011. He is the first ‘royal’ to reach the South Pole.

 

Here’s how CNN covered the milestone:

 

 

Previous Coverage:

 

Prince Harry’s Antarctic Race Is Canceled, But Trek Will Go On

 

Prince Harry’s expedition to the South Pole to benefit wounded armed forces personnel via the organization Walking With The Wounded, will continue as planned, but instead of it being a race, the teams will work together as one unit to finish the challenging trek that got off to a foreboding start. 

 

Visit NBCNews.com for breaking news, and world news

 

The race began two days behind schedule due to bad weather, which caused the teams to delay their flight from South Africa. 

 

Ed Parker, an organizer of the trek says. “Over the last couple of days I felt a little uncomfortable with some of the stress placed on team members as a result of very harsh terrain conditions that we are encountering. We have had a tricky couple of days. The weather remains good but the terrain is very difficult, far harder than we were anticipating and because of various factors, I have decided to suspend the race. The reasons for this are entirely safety based. I am looking at the three teams. They are going really well but people are beginning to get very, very tired. With our doctor here, who I am in constant contact with, we just feel we are beginning to push people a little too hard, so I have suspended the race.”

 

So, the trek will continue, but it’s no longer a race to the finish line.

 

Photo shows Prince Harry wearing a red parka with a black sweater and toque with sunglasses having a laugh with other members of the Walking with the Wounded on a sunny day in Antarctica.

 

Three teams have been competing against one another to be the first to cover the 200 mile route, through some of the harshest terrain in the world with extreme temperatures that have plunged to minus 30 degrees.

 

Photo shows members of the Walking WIth The Wounded at the South Pole trekking in harsh conditions with the wind whipping up the snow around them.

 

Harry’s team will now work with the other teams, one led by actor Dominic West (“The Wire”) and “True Blood” star Alexander Skarsgard. All teams are hoping to be standing on the South Pole by Dec. 16.

 

 

Photo shows official portrait of Prince Harry and his Royal Insignia of a stylized scripted letter H under a crown and the letterhead of ST. Jamess Palace.

 

Walking With The Wounded continues to champion our extraordinary wounded service personnel and highlight their determination and courage to face future challenges following injury on the battlefield, whether physical or cognitive. Their inspirational expeditions have already impacted so many and I hope they will continue to impact many more.

 

I am delighted to be Patron of the Allied South Pole Challenge, their latest ambitious project. Not only will this involve wounded personnel from the United Kingdom, but there will be a team from the United States and a team from the Commonwealth. This means the awareness created will be global, and will not only show the tenacity of these young men and women, but also the strong links between our Allies, off the battlefield as well as on.

 

The Allied Challenge in 2013 promises to be a quite remarkable endeavour. I urge everyone to get behind the expedition and ‘Support the Walk’.

 

Prince Harrys signature

 

Banner reads: A United Global Endeavour

 

Abled Public Service Ad for Walking With The Wounded. Their logo depicts a disabled veteran with an artificial leg cross country skiing and pulling a sled with supplies. CLick here to go to their website.

 

Abled Public Service Ad for Soldier On an Australian charity helping wounded warriors. Their logo depicts two servicemen seen from behind helping a wounded comrade who has his arms around the back of their shoulders. Click here to go to their website.

 

Abled Public Service Ad for Soldier On - Sans Limites - part of the Canadian Forces Morale and Welfare Services as part of the Canadian Armed Forces. Their logo is comprised of a crown-topped broach that features a propellor, an anchor and crossed sabers that represent all divisions of the Canadian Armed Forces and the RCMP. Click here to go to their website.

 

Abled Public Service Ad for Soldiers To Summits, a program of No Barriers USA - a non profit organization that helps to unleash the power of their human spirit by encouraging them to transcend barriers. Click here to go to the Soldiers to Summits website.

 

Related Stories Banner

 

AbledWarriors link banner to post on Escorts of the Heart: Solemn Flight. The story details the reaction of passengers to the news their flight is carrying a fallen serviceman home. The photo shows a military honor guard greeting his flag-draped casket as it's unloaded from the aircraft's cargo bay. Click here to go to the story.

 

AbledWarriors Post Link Banner shows a row of six Golden retriever puppies sitting side by side on a picnic table facings the camera, with green grass in the background. The puppies are wearing blue kerchiefs around their neck with the Warrior Canine Connection logo that shows the profile of a dog inside a blue star. The headline reads: Combat Stress: Vets Train Dogs For Vets. Click here to go to the story.

 

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AbledCauses link banner to UNiTE: 16 Days of Activism campaign to raise awareness to end violence against women. Click to go to the story.
AbledCauses link box shows a photo of Nick and Amy Auden with their 3 children with a scenic vista of Colorado rolling hills behind them. The headline reads: Save Locky's Dad - Sign the petition. Click here to go to the story.
AbledCauses link box shows a photo of Internet Guru Molly Holzschlag speaking at a seminar with the headline: Internet Pioneer Ill. Click to go to the story.
AbledCauses story link deadline reads: Joy Jars: The Legacy of Jesse Joy Rees over a photo of Jesse, who lost her battle with cancer, and a photo of a young boy who has lost all his hair to chemotherapy and who is holding one of the Joy Jars full of small toys and treats. Click here to go to the story.
AboutAbled link Banner shows Abled Co-Founder Laura Meddens looking out at the seaside at sunset in Curaçao with the text Laura Meddens: An Abled Vision For Global Accessibility, Inclusion and Equality. Click here to go to the AboutAbled page.
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AbledCauses-Unite-To-End-Violence-Against-Women

POSTED ON November 26th  - POSTED IN AbledCauses
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AbledCauses Post banner shows a blurred blue background with the United Nations logo in white behind the words in large orange letters 16 Days of Activism. A series of panels from left to right below show the logo of the United Nations Secretary-General's Campaign Unite to ENd Violence Against WOmen. The next panel shows the continents of the world in blue against a white background with the headline Unite Worldwide; The third panel shows round red circle with a stylized white x in it with the headline Stop Rape Now and the subheadline U.N. Action Against Serial Violence In Conflict; the fourth panel reads Say No (in orange) Unite (in dark blue) To End Violence Against Women (in light blue); The last panel reads: United Nations trust Fund To End Violence Against Women. The AbledCauses headline reads: UNITE to end violence against women: U.N. Secretary General's Activism Campaign.

Photo by Jolanta Pawlak shows Abled Co-Founder Laura Meddens looking out at the seaside at sunset in Curaçao. Laura has dark-blonde shoulder length hair with her white and black sports sunglasses perched on top of her head. She is wearing a black and white leopard print blouse with black and leopard-print piping on the sleeves along with a pearl neckalce and pearl earrings. The sunset warms her tanned face with a slightly orange glow while the out-of-focus background shows a line of orange-tinged clouds on the horizon in between the deep turquoise sky and ocean.

 

Orange The World In 16 Days – Introduction from Abled® Co-Founder Laura Meddens

 

United Nations Secretary-General Ban Ki-moon’s Campaign UNITE to End Violence Against Women has proclaimed the 25th day of each month Orange Day as an ongoing effort to highlight the call for the elimination of violence against women and girls, as the campaign puts it, ‘without reservation, equivocation or delay’.

 

It is a sad commentary that at this stage of human evolution in the year 2013 that such a day or campaign are even necessary. And as a survivor of domestic violence that contributed to the loss of my eyesight, I know, first-hand how much needs to be done in improving education, attitudes, cultural and peer influences, as well strengthening laws and social support services.

 

As a person living with a physical disability, I also know, first-hand, that violence against disabled persons, regardless of gender, is much higher than their non-disabled counterparts.

 

So, regardless of whether you are marking November 25 as the International Day For The Elimination Of Violence Against Women, or as the start of the 16 Days of Activism Against Gender Violence Campaign, this needless violence is an issue that needs our attention and actions each and every day of the year.

 

Therefore, our coverage of this issue at Abled.com will continue beyond the 16 Days Campaign, and we invite you to revisit this page often as we add new stories and new ideas for solutions as part of our ongoing coverage, and we welcome your ideas in our facebook comments section.

 

We hope that you will help to spread the word that violence against any person, regardless of gender, race or ability is a violation of human rights. Period. 

 

Laura Meddens

Co-Founder, Abled.com

 

AbledCauses-U.N. Stop Rape Campaign banner featuring photographs of people with their forearms crossed in a blocking move - the central color photos are of actresses and U.N. Spokeswomen Charlize Theron and Nicole Kidman.

 

AbledQuickFacts banner reads:   70% of women experience violence in their lifetime.  Violence against women is a human rights violation.  Prevention is possible and essential.

 

Abled causes United Nations Get Cross logo featuring a red circle with a tilted cross in the middle to symbolize crossed arms.

 

AbledCauses - photograph shows United Nations Secretary-General Ban Ki-moon with his forearms crossed in front of him as part of the Get Cross - Stop Rape Campaign.

 

AbledCauses quotation reads: Get Cross.  Break the silence.  When you witness violence against women and girls, do not sit back. Act.  Ban Ki-moon United Nations Secretary-General

 

AbledCauses link to the UniteWorldwide webpage. Click here to go to the site.
AbledCauses link box to the United Nations' Stop Rape Now campaign. Click here to go to the website.
AbledCauses link box to the Say No United To End Violence Against Women website presented by U.N. Women - United Nations Entity for gender Equality and the Empowerment of Women. Click here to go to the website.
AbledCauses linkbox to the United Nations trust Fund to End Violence Against Women. Click here to go to the website.

About UNiTE

Launched in 2008, the United Nations Secretary-General’s UNiTE to End Violence against Women campaign aims to raise public awareness and increase political will and resources for preventing and ending all forms of violence against women and girls in all parts of the world.

 

The global vision of the UNiTE campaign is a world free from violence against all women and girls. This vision can only be realized through meaningful actions and ongoing political commitments of national governments, backed by adequate resources.

 

The United Nations Secretary-General’s UNiTE campaign calls on all governments, civil society, women’s organizations, men, young people, the private sector, the media and the entire UN system to join forces in addressing this global pandemic.

 

Through its advocacy initiatives at the global, regional and national levels, the UNiTE campaign is working to mobilize individuals and communities. In addition to supporting the longstanding efforts of women’s and civil society organizations, the campaign is actively engaging with men, young people, celebrities, artists, sports personalities, private sector and many more.

About Stop Rape Now

This campaign is being mounted by UN Action Against Sexual Violence In Conflict. (UN Action) unites the work of 13 UN entities with the goal of ending sexual violence in conflict.

 

It is a concerted effort by the UN system to improve coordination and accountability, amplify programming and advocacy, and support national efforts to prevent sexual violence and respond effectively to the needs of survivors.

 

UN Action HAS THREE MAIN PILLARS:

  • Country Level Action: support joint strategy development and programming by UN Country Teams and Peacekeeping Operations, including building operational and technical capacity.
  • Advocating for Action: action to raise public awareness and generate political will to address sexual violence as part of a broader campaign to Stop Rape Now.
  • Learning by Doing: creating a knowledge hub on the scale of sexual violence in conflict, and effective responses by the UN and partners.

 

The Get Cross – Stop Rape Now Campaign

Explain the issue and the crossed-arm gesture to your friends, classmates, and colleagues. Take a photograph of yourself displaying the X gesture and add it to our global photo map. Facebook, blog, and tweet this website and the Get Cross! campaign, add a link to your personal or professional webpage to help spread the word, or make your own Stop Rape Now video like these students from the University for Peace:

About Say NO

Say NO – UNiTE to End Violence against Women is a social mobilization platform on ending violence against women and girls, contributing towards UN Secretary General’s system -wide campaign, UNiTE to End Violence against Women. Launched in November 2009 by UN Women, Say NO – UNiTE showcases advocacy efforts and engages people from all walks of life, online and on the ground.

 

One in three women and girls experience physical or sexual violence from men in their lifetime. It happens everywhere – at home and at work, on the streets and in schools, during peacetime and in conflict. Violence against women and girls has far- reaching consequences, harming families and communities, stunting human development, and undermining economic growth. Everyone has a role to play in combating this global pandemic; the time to act together is NOW.

 

Building upon the momentum generated during its first phase when 5,066,549 people signed on to a global petition to make ending violence against women a top priority worldwide, Say NO – UNiTE has since then gone on to recording more than 5 million actions from people around the world. Heads of States, Ministers and Parliamentarians have added their names to support the initiative, and 60 Governments have announced national commitments to end violence against women and girls.

 

Say NO – UNiTE to End Violence against Women is an expanding global coalition of individuals, organizations, governments and the private sector to realize a vision that is ambitious, but must never be impossible – a future that is free from violence against women and girls.

 

Starting from December 2013, Say NO – UNiTE will move from this website and continue showcasing your actions through Facebook and Twitter. For the 16 Days of Activism Against Gender Violence, from 25 November – 10 December, we will focus on a single action – together with you, we will Orange the World in 16 Days.

Join us on facebook.com/SayNO.UNiTE

Follow @SayNO_UNiTE on Twitter

About UN Trust Fund

The UN Trust Fund to End Violence Against Women has announced USD 8 million in grants to 17 initiatives in 18 countries and territories. First-time grant recipients include organizations from Antigua and Barbuda, Mauritania, Myanmar and Kosovo (under UNSCR 1244).

 

These new grants are expected to reach 2.3 million beneficiaries between 2014 and 2017. “Violence against women and girls can be systematically addressed, and, with persistence, eliminated. The UN Trust Fund to End Violence against Women is dedicated to doing just this,” said Ms. Phumzile Mlambo-Ngcuka, Executive Director of UN Women. “Working with partners across the world, the Fund supports concrete action toward a world free of violence. The support of governments, corporations, foundations and individuals is crucial in achieving this goal.” 

 

The UN Trust Fund to End Violence Against Women is accepting applications for its 18th grant cycle (2013) from civil society organizations and networks—including non-governmental, women’s and community-based organizations and coalitions and operational research institutions—government authorities at the national and local levels, and UN Country Teams in partnership with governments and civil society organizations.

 

The deadline for submission of applications is 22 January 2014, 23.59 EST (GMT–5).

 

All applications must be submitted online. The UN Trust Fund will not accept applications submitted via e-mail, regular post and/or facsimile.

 

For full details about the application process, please consult the following documents:

The online application will be available from 25 November 2013 until 22 January 2014 at grants.unwomen.org.

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AbledCauses-Help-Molly-Holzschlag

POSTED ON November 7th  - POSTED IN AbledCauses
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AbledCauses link banner shows a screengrab from the gofundme.com page set up for Molly Holzschlag by Brian Keith Sullivan. The headline reads Help Molly Holzschlag: The Fairy Godmother of the Internet Needs Our Support.

“If Tim Berners-Lee is the father of the Web, then Molly Holzschlag is its fairy godmother.”

 

If you work in the Tech world, it’s quite likely you know who Molly Holzschlag is. If you don’t, suffice it to say she’s a really big deal when it comes to Web standards and, more recently, when it comes to improving Accessibility and inclusive design to break down barriers to a more accessible Internet.

 

It’s for that more recent effort that all of us at Abled® applaud Molly and want to help with spreading the word about the campaign to help her through a very difficult and challenging time. 

 

We hope you’ll consider making a donation and spreading the word by sharing this link to the campaign:

 

http://www.gofundme.com/HelpUsHelpMolly

 

We’re sharing the eloquent words that Brian Sullivan, the Co-Founder of Big Design Conference, and other friends have written as part of their GoFundMe.com campaign to raise funds to support Molly through this very serious health crisis:

 

Who is Molly Holzschlag?

Molly E. Holzschlag has changed the world in many ways. She is the author of over 30 books on web design, CSS, accessibility, web standards, and more. Molly has helped to establish many of the web standards used today by working with the World Wide Web Consortium (W3C) and the Web Standards Project (WaSP). She worked directly with CERN, AOL, Microsoft, BBC, Opera, and Netscape to ensure browsers support modern standards. 

 

Recently, Molly has led the W3C’s CSS Working Group and Accessibility Community Group to emphasize the importance of inclusive design on the Internet to overcome accessibility barriers for people with disabilities. The San Francisco Chronicle named Molly Holzschlag as one of the Top 10 Most Influential Women in Technology. Molly has changed the world several times over.

 

In the following video posted at YouTube, web standards guru  Molly Holzschlag joins Davin Wilfrid in April, 2013 for a chat about the state of the open web, why browser monoculture is evil, why accessibility is just quality engineering, and why visual semantics are so important to consider. 

 

 

Who are the friends of Molly?

The people who are managing this effort include:

Sharron Rush (Executive Director, Knowbility)
Brian Sullivan (Co-Founder, Big Design Conference)
Claudia Snell (Web Director, Nichols College)
Joseph O’Connor (Accessibility Team Lead, WordPress)
Keith Anderson (DFW-IXDA Team Leader & Sprint Developer)

 

We like to call ourselves Team Molly. All money collected from this effort will go towards medical expenses and recovery costs.

 

What’s Happened to Molly?

In April, Molly was diagnosed with a rare liver condition, which ravages her internal organs causing fatigue, dizziness, confusion, loss of appetite, and weakness. Immediately, Molly was put on a very restrictive diet, vitamin regimen, and chemo-therapy. According to her doctors, Molly needs to continue with another 6-9 months of chemo-therapy to go into full remission. Molly’s doctors told her that she could not work, while undergoing this extreme treatment.

 

Molly was employed at the small NPO Knowbility as the Open Web Evangelist. Knowbility was able to put her on Family and Medical Leave which allowed Molly to retain her health insurance coverage. The FMLA time period has ended and the only coverage available now is through COBRA. 

 

Molly’s current coverage lasts until November 1, 2013. She does have a one month supply of pills. The monthly cost of her chemo-therapy is about $2,800 and COBRA will be an additional $1000. With a long recovery expected and the inability to work, Molly needs our financial support. Her mother and brother are doing what they can, but now Molly needs us.

 

We know it is a tough time for many people. Here is how you can help.

 

1. Give whatever you can. (It’s very easy to donate and secure.)
2. Spread the word. Blog this, tweet this, re-tweet this.
3. Help find a donor (maybe a generous company or individual will match your donation).
4. Run a workshop and send the money to this campaign.

 

For many of us, we have purchased many of the books that Molly has written. Consider a donation of $25 or more, which is like purchasing one of Molly’s book.

 

Molly has changed the world several times over. It is now time for us to change her world.

 

Update (11/6/2013):

We have updated our initial goal of $25,000 to $50,000 because of the overwhelming response. We are also using the hashtag on twitter of: #TeamMolly

We are Team Molly! #TeamMolly Go team!!!

AbledCauses banner shows a line drawing of a heart inside the gradient green rounded triangle of the Abled icon.

 

AbledCauses Post Link Banner shows John Furniss at work, restoring a grand piano. The headline reads: John Furniss Piano Service: Help blind piano restorer to buy adaptive tools shop. Click here to go to the post.

 

AbledCauses link box shows a photo of Nick and Amy Auden with their 3 children with a scenic vista of Colorado rolling hills behind them. The headline reads: Save Locky's Dad - Sign the petition. Click here to go to the story.

 

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AbledAlert Post Link Banner shows photos from the posters of three missing autistic teen males. Two are marked with red banners and the words 'found', while the third read 'Found Dead'. The headline reads: Missing Autistic Teens: Tragic Update. Click here to go to the story.

 

Headlines banner

 

AbledConditions Post Link Banner shows a New York Times illustration by Lauren Nassef depicting three open milk cartons seen at an angle with a 'Missing' message on one side and the image of a male teenager 'walking' through the side panels. The headline reads: Autism: How to prevent children and teens from wandering and how to respond if they do. Click here to go to the post.

 

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