AbledPeople-Daniel Kish-Why-Lily-Grace Hooper-needs-her-long-cane

POSTED ON November 22nd  - POSTED IN AbledPeople
AbledPeople Post-banner shows Daniel Kish standing on a round red-carpeted stage at the 2015 TED Conference in Vancouver. He has dark hair and is wearing a red polo shirt with black trousers and is holding a long white navigation cane. Behind him is a large 3D logo spelling out TED in backlit capital letters. The audience surrounds the stage. The headline reads: Daniel Kish: Why Lily-Grace should be allowed her long cane.

The Real-Life ‘Batman’ Fights For Lily-Grace Hooper’s Right To Use A Long Navigation Cane And Asks:“Who’s Really Getting In Whose Way?

 

Perhaps no one is better qualified to weigh-in and provide professional advice to both sides in the debate over a blind 7 year-old UK girl’s right to use a long navigation in school than Daniel Kish. He calls it a human right.

Daniel holds two Masters degrees, Life-Span Developmental Psychology from California State University, San Bernardino, and Special Education from Cal. State Los Angeles. Daniel also holds two current national certificates in orientation and mobility – Certificated Orientation and Mobility Specialist (COMS), since 1996, and National Orientation and Mobility Certificant (NOMC), since 2005. He is the first blind person to obtain the COMS, and also the first to obtain both certificates.

Less formally, he’s known around the world as ‘The Real Life Batman‘ for his self-developed form of echolocation that he calls ‘FlashSonar™‘, a humanized form of sonar similar to that used by bats and dolphins to navigate in the dark by sending out high-pitched clicking sounds.

Why did Daniel develop this technique and what’s all of this got to do with Lily-Grace’s case? You’ll get the fascinating answers in the following video of Daniel’s presentation at the main international TED 2015 Conference in Vancouver. Then we’ll follow that with why he’s best qualified to comment on  what’s shaping up to be “Canegate” in Bristol, England, and the scientific justification for Lily-Grace’s use of a long cane.

Daniel Kish, Founder and President of 15 year-old Long Beach, California-based World Access For The Blind is speaking out on behalf of 7 year-old Bristol student Lily-Grace Hooper who was banned from using her white navigation cane at school because it may pose a danger to others.

Daniel asks the rhetorical question, Is the danger from the navigation cane or more from the ill-informed and ill-experienced ‘health and safety’ regulators?”

Daniel and his Perceptual Navigation Instructors have provided long-cane training and FlashSonarEcholocation training to thousands of students and families in the United States and around the world, and to over 60 students and families in the U.K through about two dozen workshops since 2007, including 12 children below the age of 4.

As Daniel says, “I regard perception as a sovereign right, not to be infringed upon because it may seem inconvenient.

I have found that blind people and their sighted peers, children and adults alike, learn to accommodate the longer cane when it is respectfully regarded as a part of natural function.

Blind students learn to consider the presence of their cane with respect to others, and sighted people learn to respect that presence. If these concerns persist in a given setting, some education provided to peers should resolve the matter.

Longer canes can become awkward in congested environments. Congested technique usually resolves this, and I find children accommodate this quite well. Concerns are sometimes raised about the cane getting in people’s way.

At the risk of sounding militant, who’s getting in whose way?”

It’s Daniel Kish’s passionate belief that any child who is blind from the early years should learn to use a long cane as soon as they can walk. He has met many parents desperate to help their young children, but unable to find the support they want in their local area. He has also met other parents with older children, who say they wish they had known of his approach sooner.

In his view, withholding cane training until age seven or above is likely to cause long-term damage to the child’s mobility and independence. He calls this “dependency training” because “it fosters dependency at the age when a child should be achieving self direction.”

Daniel explains, “I worked with an 18 month old child who would only crawl when not holding on to someone. However, when she was offered the adult cane, she began taking control of the cane within minutes to gauge surface gradients and the height of steps. Within half an hour, she had wrested the cane from her dad’s hand, and was given one more appropriate to her size.”

Here he explains his unconventional approach which he calls “perceptual mobility training”. He defines this as: “Engaging the whole brain in a developmentally natural manner that activates the perceptual imaging system by fostering self directed freedom of discovery. Rather than trying to push a contrived set of skills into the student, we stimulate the imaging system to manifest skills as they are needed. It is not a collection of skills that make perception happen; it is perception that compels skills to develop.”

The Perceptual Imaging System

“Perception occurs in two stages – awareness and imaging. Awareness simply refers to the stimulus knowledge that something is present to the senses. Imaging occurs when this awareness takes on form and substance in a person’s mind. An image doesn’t need to be visual; it can be tactile or auditory as well.

For example, a young boy moving his cane touched my shoe and said, ‘I just touched someone’s shoe.’ It is one thing to know that your cane has touched something, but something about the boy’s perception of the sensation told him, not just that he’d touched something, but that it was a shoe. The brain can build images drawn from any sensory input, and any experience.”

Choosing a cane for a small child

There are as many types of canes and ways to use them as there are body types and ways of moving. These are general guidelines based on over 15 years work with many thousands of students, teachers and families of every type in nearly 40 countries, and my expertise in perceptual development. I and other instructors adopting this approach have found that it successfully activates the brain’s recognition and acceptance of the cane as a natural perceptual extension.

We use what I call a perception cane, which has the following qualities:

Full length

A certain distance of perception is needed to activate the imaging system. For this the cane should be about as long as the child is tall. Sighted people use their eyes to scan several steps ahead.

A blind child, who has shorter arms and may move more quickly and erratically than an adult, will need a long enough cane to perceive advance information about the way ahead. This allows time for the brain to receive and process all the information it needs to make decisions on moving around.

Lightweight

The cane is a delicate instrument, like an antenna, and should be as light as possible. In order to be recognised and accepted by the brain as a natural perceptual extension, the cane should not be cumbersome or awkward.

I do not usually recommend roller tips or other heavy tips. A big tip may seem easier, but it can only go so far toward covering up technique that lacks finesse.

Conductivity

As a perceptual extension, the cane should convey as much information as possible with as much ease as possible. For children I generally recommend rigid, non-folding canes. They are generally lighter, sturdier, and more conductive. They are also less likely to lead to “folded cane syndrome” in which the cane spends more time folded and stowed away than actually in use. I also do not generally recommend foam cane grips, as these tend to insulate the hand from sensations.

For more information about long cane training or to book a workshop or consultation, call World Access For The Blind at +1 866.396.7035 or visit their Contact Us page.

You can also send a message at their Facebook page.

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AbledRights link box shows a photo of Kristy Hooper and her 7 year-old daughter Lily-Grace standing outside the gates of Pembroke Primary School in Bristol, England. Lily-Grace is holding her white navigation cane because she is blind. The headline reads: Bristol, UK: Blind child's Cane Banned. Click on the banner to go to the story.
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A screen grab of petition at Change.org reads: Petitioning Headmistress of Hambrook Primary School. Hambrook Primary School: Lily-Grace Needs Her Long, White Cane at School! The photo shows 7-year-old Lily Grace, walking outside the gates of the school, cane in hand, with her mother Kristy by her side. Click the banner to sign the petition which had 3,165 signatures as of this writing. It needs 1,835 more to reach 5,000.
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AbledRights-Blind Girl Told White Cane Is Too Risky For School

POSTED ON November 22nd  - POSTED IN AbledRights
AbledRights Post banner shows a photo of Kristy Hooper and her 7 year-old daughter Lily-Grace standing outside the gates of Pembroke Primary School in Bristol, England. Kristy is holding her blind daughter's white navigation cane. The headline reads: Bristol, UK: Blind girl told white cane is 'too risky' for school.

Health and safety “gone mad”: Blind Bristol girl banned from using walking cane in primary school

Source: Bristol Post by Michael Yong November 17, 2015 + Updates

A blind girl has been banned from bringing her walking cane to school for “health and safety” reasons. Lily-Grace Hooper, who is seven, suffered a stroke when she was just four days old, which left her virtually blind.

But her school, Hambrook Primary School, has now told the youngster she can no longer use her walking cane, because it could trip up teachers and other pupils at the school.

A risk assessment by Gary Learmonth from Sensory Support Service – done on behalf of the school – said the cane caused a high risk to other people around Lily-Grace, and that she should instead have full adult support “100 per cent” at all times.

But her furious mother, Kristy, is worried her daughter will become to dependent on having someone show her around, and said having a helper following her around will set her daughter apart from the rest of the pupils.

_____________________________________________________________________

LATEST UPDATE: From Kristy Hooper via Facebook: “It’s a stalemate.”

Kristy Hooper I am the lucky Mummy of Lily-Grace. I will fight for her right to inclusion! We may have the world’s support but not her classmates. Terribly sad situation. She has missed a whole week of school through no fault of her own. I have reached out to the head with hope of resolution. We have stalemate! There is a petition up please, please sign and support just use #LilyGraceHooper to find thank you all for your continued support xx Or find her page here https://m.facebook.com/Lily-Grace-1413976252233173/

You can also click on the banner at the bottom of this page to sign the Petition.

_____________________________________________________________________

Lily-Grace suffered a stroke days after she was born. As a result she lost her 3D vision, and became blind in her right eye. She can now only see lights and colours in her left.

Shortly before Christmas last year, she started using long wrapping paper rolls to help her get around the house after stumbling across them.

Since then, she had asked her mum for a stick for Christmas. The seven-year-old was given a long fibre-glass walking cane by Common Sense Cane, a charity for blind children earlier this year.

Lily-Grace started using the cane in school in April. Kristy said it had become “an extension of her daughter’s arm” and that it was vital she was allowed to use it.

She added: “It is a disability, but I want to celebrate it and make sure she can become independent.

“When the school told me she can no longer bring her cane into school, I just thought this must be health and safety gone mad.

“She hasn’t had any problems with any of the other students, and none of the parents have complained about it – in fact, they have all been very supportive.

“I don’t understand where the school is coming from. Lily-Grace has taken to the cane very quickly, and she needs it as she travels to school, walks to the playground, or just being in school.”

She added: “I am absolutely livid. What about the health and safety of my girl? I like school, they are a good school, but this really is very poor advice.

Leading charity for vision-impaired children, Blind Children UK, said it was imperative a child learned independence from a young age.

A spokesman said: “Using a cane teaches a child to keep themselves safe and can help them to become less reliant on others.

“Early intervention is vital to help a child with sight loss move around more confidently and grow towards greater independence as an adult.

“While a cane may not be suitable for every child or young person with sight loss, if they are taught how to use it by a trained habilitation specialist, then, in general, there shouldn’t be an issue with using one safely around school.”

The risk assessment said Lily-Grace should have full adult support at all times, and that she should use the hand rails to get about.

She also has been asked to “walk carefully over all surfaces” especially paving stones and wet drain covers – but without the use of her current cane.

Instead the risk assessment wants her to use a shortened cane, something her parents say is not suitable because she had become used to her current cane.

Hambrook Primary School’s head teacher, Jo Dent, said they would discuss the situation with Kristy.

She said: “The school’s mobility officer raised health and safety issues around the new cane following a recent risk assessment.

“We have to consider all of our pupils, so it is important that we have an opportunity to discuss the situation before we make any decisions.

“We are very keen to resolve this issue as soon as possible and have been actively seeking to engage with the parent to bring this to an agreeable conclusion.

“The pupil has not been banned from bringing in their cane, we have simply asked them to not use it around school as a temporary measure, until we have the chance to meet with the parent and discuss the situation.

“It was initially hoped that we would have this resolved within a day or two.”

UPDATE: Regulator rubbishes ‘health and safety’ claims which denied blind Bristol girl her white cane

Geoff Cox, who heads the HSE’s public sector team, also works with schools on safety.

He said: “There is nothing in health and safety regulations that would ban a child using a walking stick in school, or anywhere else for that matter.

“In cases like these people need to sit down and work out sensible and proportionate arrangements that will work in practice. I hope common sense prevails here.

“This is an example of someone using it the wrong way. I’ve never heard of it before.

“Children have to grow up to live independently and find their own way, and other children have to learn to live in a society where there are people with disabilities and how to give them space or help them.”

He hopes the school will now work with charity Blind Children UK so they can come to a solution.

Read more: http://www.bristolpost.co.uk/Regulator-rubbishes-health-safety-claims-denied/story-28193039-detail/story.html#ixzz3s7fJyLcx
Follow us: @BristolPost on Twitter | bristolpost on Facebook

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AbledPeople link box shows Daniel Kish standing on a round red-carpeted stage at the 2015 TED Conference in Vancouver. He has dark hair and is wearing a red polo shirt with black trousers and is holding a long white navigation cane. Behind him is a large 3D logo spelling out TED in backlit capital letters. The audience surrounds the stage. The headline reads: Daniel Kish: Save Lily-Grace's Long Cane. Click the box to go to the story.
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AbledSurvival link box shows a blurred photograph of people running past the Café Republique during the recent terrorist attacks in Paris. The headline reads: Terrorist Attack: Run! Hide! Tell!. Click the box to go to the story
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A screen grab of petition at Change.org reads: Petitioning Headmistress of Hambrook Primary School. Hambrook Primary School: Lily-Grace Needs Her Long, White Cane at School! The photo shows 7-year-old Lily Grace, walking outside the gates of the school, cane in hand, with her mother Kristy by her side. Click the banner to sign the petition which had 3,165 signatures as of this writing. It needs 1,835 more to reach 5,000.
Click here to return to the Abled.com homepage.

AbledResearch-Diabetes-Stem-Cell-Breakthrough

POSTED ON October 10th  - POSTED IN AbledConditions, AbledHealth, AbledResearch, AbledWellness
AbledResearch Banner shows two scientists sitting by a microscope in a lab checking a vial of something. The image is in the foreground with a photo of the earth at sunrise as seen from space with the AbledResearch logo at the top.
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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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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