From One Goal to the Next

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Parker Thornton about to Go Over the Edge

A crowded room quiets as Parker Thornton approaches the podium. He has been tasked with motivating Special Olympics Athlete Health Messengers to commit to being fit every day by working out more, eating healthy, and cutting down on soda.

He starts his speech by proclaiming the three words he says to himself in the mirror every day, “I’m happy, I’m healthy, and I feel fantastic!” Parker let those familiar words calm his nerves at speaking in front of the large crowd. After the speech has concluded, the audience erupts into applause, motivated and encouraged to take on the challenge of living a healthy life.

Parker’s life didn’t start at peak health. As a newborn, he contracted viral meningitis and was hospitalized at Boston’s Children’s Hospital for five weeks, much of it on life support. He survived his first challenge, but the result of the viral meningitis left Parker with significant learning disabilities, which resulted in an anxiety disorder and depression.

When Parker was eight years old, he was introduced to Special Olympics New Hampshire when local families came together to start a ski team for children with intellectual disabilities. That introduction has led to more than 28 years of involvement with Special Olympics. Parker has won numerous gold medals in sports ranging from basketball, golf, skiing, and pentathlons. “I realized that Special Olympics was more than just sports; it taught me how to be a better man, a proficient communicator, and how to be a mentor to other athletes who have their own challenges. Special Olympics tells you how to speak up, get healthy to be a better athlete, and blossom gifts in yourself and others,” Parker said.

Parker recently had an opportunity to make his own life healthier. “I wasn’t happy with my body, and Parker Thornton smiling to the cameraI was depressed,” Parker said. He signed up for a sprint triathlon, which motivated him to train for seven months. Parker lost 20 pounds and was able to go off prescribed medication. Seeing a positive change in his body and completing the triathlon showed Parker that even if it takes hard work, he can accomplish whatever he sets his mind to.

Parker has set his mind to tackling new challenges in the last few years. He speaks frequently on topics related to disabilities, Special Olympics, and the health disparities of people with disabilities. “Inclusive health is such a big issue. No one understands the health differences between people with and without intellectual disabilities. I want to motivate and get people thinking about how they can make changes to better the lives of people with intellectual disabilities,” he said.

Parker is now a consultant for Special Olympics International. He lead an Athlete Health Messenger training for a new cohort of athlete leaders who are tasked with taking the charge for equal access to health for people with disabilities. He co-edits a monthly health newsletter that goes out to thousands of recipients and is continuously tasked with being called upon to give motivational speeches. Speaking fills Parker with a sense of purpose. He wants to motivate others to see people with intellectual disabilities as part of human diversity and should be celebrated as such.

Parker is planning on accomplishing his next goal in 2019: attending professional stunt school in California. “It’s been a lifelong dream of mine to get trained to do professional stunts like you see in the movies,” he said. “I can’t wait to see what’s next.”

Stepping into the Limelight

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Verizon's collage of disability images

By Kat Castagnoli, Editor, DIVERSEability Magazine

Seeing people with disabilities on a TV series, the big screen or even in commercials hasn’t always been the norm. Actor portrayals have been more typical than an actual person with a disability playing a role. But no more. DIVERSEability Magazine is giving a standing ovation for those with a disability who are proudly stepping into the limelight so that more youngsters can point to a television or movie screen and say, ‘hey, they’re like me!’

Like Ali Stroker, our cover story, the very first actress who uses a wheelchair to win a Tony Award. The 32-year-old, who won for Best Featured Actress in a Musical for her portrayal of Ado Annie in Oklahoma!, says it’s “really cool” to see herself represented. “It didn’t feel like, ‘Oh, you did something to overcome being in a chair,’” Stroker said. “It was actually, ‘We’re recognizing you for being at the highest level of your field.’ That’s what I’ve always wanted.”

And what about America’s Got Talent’s latest winner Kodi Lee? The singing phenom—who is both blind and autistic—stole the hearts and minds of millions who were cheering him on through Season 14, including AGT judge and actress Gabrielle Union, who declares, “Kodi has literally changed the world.”

We here at DIVERSEability can think of nothing better. Because when people with disabilities are represented, it changes the way we think about disability and inclusion in all walks of life and business. The 2,000 attendees at Disability:IN this past July can definitely testify to that. Read the jam-packed Wrap-Up on page 16, and you’ll see “life-changing” as an overriding theme.

In addition to our Best of the Best list of disability-friendly companies, we’re seeing even more jobs for people with a disability (page 46). Also, take a look at ways to create better experiences for all your employees (page 40) as well as how to make your business even more successful (page 66).

Finally, we are thrilled to see companies like Verizon shattering stereotypes by launching their new Disability Collection of images (pictured above). The company says the new image library aims to shed light on how the world views the disability community.

We challenge all companies to step into the spotlight and follow suit to create a more inclusive, visible and well represented workforce. Can you imagine a world where we can all say, ‘hey, they’re just like me!?’ We can.

This AI system predicts seizures an hour before they happen with 99.6% accuracy

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picture of a brain x-ray

A pair of researchers from the University of Louisiana at Lafayette have developed an artificial intelligence system that predicts epileptic seizures with 99.6 percent accuracy.

The World Health Organization estimates that between 4 and 10 in every 1,000 people suffer from epilepsy-related seizures. According to numerous studies, 70 percent of those afflicted have symptoms that can be mitigated with medication. The problem is that many patients are unable to tell when they enter the preictal stage (the period directly before a seizure occurs) when such intervention would be effective.

Professor Magdy Bayoumi and researcher Hisham Daoud, the duo who created the system at University of Louisiana at Lafayette, want to take the guesswork out of seizure prediction. According to the pair’s research paper:

We propose four deep learning based models for the purpose of early and accurate seizure prediction taking into account the real-time operation. The seizure prediction problem is formulated as a classification task between interictal and preictal brain states, in which a true alarm is considered when the preictal state is detected within the predetermined preictal period.

Predicting a seizure is no small feat, especially for AI. Machine learning systems essentially run on data; the more you feed them the better the training and results. Unfortunately the frequency, detection time before onset, duration, and relative intensity of a seizure can vary wildly from one subject to the next.

This means, unlike teaching an AI to recognize photos of cats by feeding it millions of cat images, you can’t use a general purpose training dataset to create a seizure-detection system for individual patients. The researchers instead use long-term records of a person’s cranial EEG scans to develop a sort of baseline for brain activity before, during, and after seizures.

Patient’s personal data is required to develop the training and prediction paradigm, but the results are nothing short of astounding. Bayoumi and Daoud report near perfect accuracy at 99.6 percent detection with a false detection rate of nearly zero.

This has the potential to dynamically improve the lives of the estimated 50 million people afflicted with epilepsy world-wide.

Continue on to The Next Web to read the complete article.

FDA approves new breakthrough therapy for cystic fibrosis

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trikafta package

The U.S. Food and Drug Administration (FDA) recently approved Trikafta (elexacaftor/ivacaftor/tezacaftor), the first triple combination therapy available to treat patients with the most common cystic fibrosis mutation. Trikafta is approved for patients 12 years and older with cystic fibrosis who have at least one F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is estimated to represent 90% of the cystic fibrosis population.

“At the FDA, we’re consistently looking for ways to help speed the development of new therapies for complex diseases, while maintaining our high standards of review. Today’s landmark approval is a testament to these efforts, making a novel treatment available to most cystic fibrosis patients, including adolescents, who previously had no options and giving others in the cystic fibrosis community access to an additional effective therapy,” said acting FDA Commissioner Ned Sharpless, M.D. “In the past few years, we have seen remarkable breakthroughs in therapies to treat cystic fibrosis and improve patients’ quality of life, yet many subgroups of cystic fibrosis patients did not have approved treatment options. That’s why we used all available programs, including Priority Review, Fast Track, Breakthrough Therapy, and orphan drug designation, to help advance today’s approval in the most efficient manner possible, while also adhering to our high standards. The FDA remains committed to advancing novel treatment options for areas of unmet patient need, particularly for diseases affecting children.”

Cystic fibrosis, a rare, progressive, life-threatening disease, results in the formation of thick mucus that builds up in the lungs, digestive tract, and other parts of the body. It leads to severe respiratory and digestive problems as well as other complications such as infections and diabetes. Cystic fibrosis is caused by a defective protein that results from mutations in the CFTR gene. While there are approximately 2,000 known mutations of the CFTR gene, the most common mutation is the F508del mutation.

Trikafta is a combination of three drugs that target the defective CFTR protein. It helps the protein made by the CFTR gene mutation function more effectively. Currently available therapies that target the defective protein are treatment options for some patients with cystic fibrosis, but many patients have mutations that are ineligible for treatment. Trikafta is the first approved treatment that is effective for cystic fibrosis patients 12 years and older with at least one F508del mutation, which affects 90% of the population with cystic fibrosis or roughly 27,000 people in the United States.

Continue on to the FDA to read the complete article.

In Helping His Dad With Diabetes, Young Mexican Chemist Pioneers Healthy—and Cheap—Sugar Substitute

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Javier Larragoiti and teamin lab developing the cheap sugar substitute

When 18-year old Javier Larragoiti was told his father had been diagnosed with diabetes, the young man, who had just started studying chemical engineering at college in Mexico City, decided to dedicate his studies to finding a safe, sugar-alternative for his father.

“My dad tried to use stevia and sucralose, just hated the taste, and kept cheating on his diet,” Larragoiti told The Guardian. Stevia and sucralose are both popular sugar alternatives, and many reduced-sugar products available today contain one or the other.

With stevia and sucralose out of the picture, the young chemist needed to keep searching. He started dabbling with xylitol, a sweet-tasting alcohol found in birch wood but also in many fruits and vegetables. Xylitol is used in sugar-free products such as chewing gum and also in children’s medicine, but is toxic to dogs even in small amounts.

“It has so many good properties for human health, and the same flavor as sugar, but the problem was that producing it was so expensive,” said Larragoiti. “So I decided to start working on a cheaper process to make it accessible to everyone.”

Xylitol Made Cheaper

Corn is Mexico’s largest agricultural crop, and Javier has now patented a method of extracting xylitol from discarded corn cobs. Best of all, with 28 million metric tons of corn cobs generated every year in Mexico as waste, there’s no shortage of xylitol-generating fuel.

Simultaneously, Larragoiti hit on the idea of how to make xylitol less expensive, while inventing a way to reuse the 28 million tons of corn cobs, substantially upgrading the traditional means of disposal: burning them.

Especially in a pollution-heavy country like Mexico, reducing the amount of corn waste burned, would eliminate a portion of the carbon emissions.

His business, Xilinat, buys waste from 13 local farmers, producing 1 ton of the product each year. His invention was awarded a prestigious $310,000 Chivas Venture prize award, which will enable him to industrialize his operation and scale up production 10-fold, diverting another 10 tons of corn cob from the furnace.

Continue on to the Good News Network to read the complete article.

NFL Football Star Pays For 500 Mammograms to Honor His Mother

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DeAngelo Williams pictured with many women posing in pink t-shirts for the Breast Cancer Pink Camp

Former NFL running back DeAngelo Williams has paid for over 500 mammograms for women—because, to him, the issue is personal.

He always wore the color pink in his hair, which flowed out from his helmet, during his later years as a player for the Carolina Panthers and Pittsburgh Steelers.

“Pink is not a color—it’s a culture to me.”

He created the DeAngelo Williams Foundation in honor of his mother, Sandra Hill, who died of breast cancer in 2006. All four of her sisters then died from the same disease—all before the age of 50.

He originally chose to pay for 53 mammograms because his mom died at age 53. He called the project #53StrongforSandra.” Since then, they have paid for 500 mammogram screenings for under-insured women in four states—North Carolina, Pennsylvania, Tennessee, and Arkansas, all states he has football ties in.

Continue on to The Good News Network to read the complete article.

Double amputee, 9, to walk New York Fashion Week runway: ‘Disability doesn’t stop you’

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Daisy May walking with prosthetic legs into makeup room before an event

A young girl in the U.K. isn’t letting her disability stop her from achieving her dreams. Daisy-May Demetre, 9, will reportedly become the first child double amputee to strut her stuff on the runway at New York Fashion Week in September, SWNS reported.

Daisy-May, of Birmingham, was born with fibular hemimelia, a birth defect where part or all of the fibula bone is missing. The condition is rare, occurring in 1 in 50,000 births, according to the Generic and Rare Disease Information Center. 

When she was 18 months old, Daisy-May’s parents Alex and Claire Demetre chose to have both of the young girl’s legs amputated — the right above the knee and the left below the knee — in the hopes of giving her a better quality of life with prosthetics.

“We had the choice for her to live like that or to go for the operation,” Alex, Daisy-May’s father, said. “We didn’t know at the time that Daisy-May would be as good as she is now.”

Indeed: Daisy-May is living proof determination can defy all odds. She is a gymnast as well as a model for Boden, the country’s largest clothing catalog, according to SWNS. She’s also modeled for Nike and the British retailer Matalan, among others.

But come Sept. 8, Daisy-May will take her modeling career to new heights when she walks the runway at New York Fashion Week. Daisy-May will walk for the French-inspired children’s fashion line Lulu et Gigi Couture. She was approached about the opportunity after the line’s founder and head designer, Eni Hegedus-Buiron, spotted her modeling in London.

“I was asked if I was OK with having an amputee walk in my show. To be honest I was surprised by the question. For me, a child is a child and thus is beautiful and perfect,” Hegedus-Buiron told the outlet. “So of course I said yes.”

Alex told SWNS he is proud that his daughter will make history, but noted he and his wife hope to see more child amputees featured on the runway.

“Disability doesn’t stop you —  it definitely doesn’t stop Daisy,” Alex said, adding his daughter “belongs on the catwalk.”

Continue on to Fox News to read the complete article.

Target Unveils Adaptive Halloween Costumes For Kids With Disabilities

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child dressed in pirate costume sitting in decoratedwheelchair

Target’s newest Halloween offerings include adaptive costumes for kids with disabilities ― a sign that major retailers may finally be stepping up to make the commercial costume industry more inclusive.

The big-box giant is selling four disability-friendly costumes and two themed wheelchair covers through its Hyde and Eek! Boutique. Two of the options ― a princess dress and pirate ensemble ― are aimed at kids who use wheelchairs.

According to the online store descriptions, they were “thoughtfully designed with openings in the back that lend ease of dressing.” The costumes coordinate with decorative pirate ship and princess carriage wheelchair covers, which retail for $45 each. The princess dress and crown set costs $20 and the pirate get-up is $25.

The new line also includes sensory-friendly unicorn and shark costumes to accommodate kids with sensitivities. Per the website descriptions, both feature “an allover plush construction for a soft and cozy feel,” “flat seams with no tags,” “a hidden opening in the front pocket for convenient abdominal access” and the option to remove attachments like hoods. Each retails for $30.

Over the years, lots of children and adults with disabilities have gotten creative around Halloween time, with many putting together homemade costumes that incorporate wheelchairs and other assistive devices. There have also been adaptive costume options from small-scale vendors on sites like Etsy.

Target’s latest product line appears to be the first such costume offering from a major retailer.

Continue on to the Huffington Post to read the complete article.

‘Born This Way’ To End With Digital Wrap-Up Series & Finale Special On A&E

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Born this Way cast gathered on stage

A&E’s Emmy-winning docuseries Born This Way is coming to an end, with a fifth and final season.

The network said recently that the series will wrap with a six-part shortform digital series to begin premiering later this year on AEtv.com, and a one-hour linear series finale holiday special, to air in December on A&E.

Born This Way concluded its fourth season in May 2018. The digital series will pick up following last season’s wedding of cast members Cristina and Angel, and will continue the story of Elena, John, Megan, Rachel, Sean, Steven, Cristina and Angel.

In the hourlong series finale special, the cast will reflect on their personal growth across the four seasons of the show and discuss Born This Way’s impact on the way society views people with disabilities, according to A&E. “From finding jobs to navigating relationships and break ups to exerting their own independence, the cast will rejoice in the journey they have been on together and thank fans for all of their support along the way,” A&E said.

It’s not often that you get to make television like Born This Way which has had such a positive impact on the world. The show unquestionably changed how society views people with Down syndrome and how people with Down syndrome see themselves,” said Executive Producer Jonathan Murray. “It has shown that no one should have to live with artificial limits placed upon them and all of us, no matter what challenges we face, want the same things – independence, a chance for meaningful employment and a chance to contribute to our families and communities.”

“Being a part of the amazing and inspiring journey of our cast over the past four seasons has been an honor for myself and everyone at A&E,” said Elaine Frontain Bryant, EVP and Head of Programming, A&E Network. “We have all learned so much from their openness, resilience and spirit, and we will be forever grateful to them for welcoming us and viewers into their lives.”

Continue on to Deadline to read the complete article.

First US National Park to Offer Heavy-Duty Wheelchairs for Disabled Visitors to Enjoy the Scenery

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Woman Using Track Wheelchair at Sleeping Bear Dunes

This national park in Michigan has just become the first to implement heavy-duty wheelchairs as a means of allowing disabled visitors to enjoy their trails.

The “track chair” is a wheelchair that has been equipped with treads to navigate the steep hills and sandy trails of Sleeping Bear Dunes National Lakeshore.

The track chair program, which was launched in May, was created by Friends of Sleeping Bear Dunes—an organization that specializes in making the park more accessible to visitors.

“Here at Sleeping Bear Dunes, about half the park is designated wilderness so in those areas we can’t do a lot of maintenance or changes [to increase accessibility,]” group board chairman Kerry Kelly told CNN. “So the better option is to have a vehicle that can take the person into these areas so they can experience the trail as it is without having to make major modifications.”

The track chair can currently only be rented out for use on the 1.5-mile long Bay View Trail; however, the organization says that the track chair has already been utilized by dozens of visitors.

The track chair is free for visitors to use so long as they reserve it several days in advance.

Continue on to the Good News Network to read the complete article.

The Pretty One: With a New Memoir, Writer-Activist Keah Brown Is Redefining Disability on Her Own

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Keah Brown book cover The Pretty One shows Keah smiling with an outdoor background

How do you say the word “disability”? Does it feel shameful or derogatory, or does it roll off of your tongue, matter-of-factly? Writer and disability activist Keah Brown wishes we were all less precious when talking about disability, because while it may be a fact of her life, it’s far from the whole of it, as she reveals in her new, but already acclaimed book of autobiographical essays, The Pretty One, which has garnered praise from luminaries like Deepak Chopra and Roxane Gay, who wrote:

“What does it mean to live at the intersections of blackness, womanhood, and disability? In her admirable debut, The Pretty One, Keah Brown answers this question with heart, charm, and humor. Across twelve finely-crafted essays, Brown explores the matter of representation in popular culture, the vulnerability of facing self-loathing and learning to love herself, the challenge of repairing fractured relationships with family, the yearning for romantic love. Through her words we see that Brown is not just the pretty one; she is the magnificently human one.”

For those of us whose knowledge of cerebral palsy extends about as far as remembering “Cousin Geri” on Facts of Life, it’s worth noting that the title of Keah Brown’s debut book is a story, in and of itself. Aside from being born with cerebral palsy, she was also born a twin, just ahead of able-bodied sister Leah—who was often dubbed (you guessed it) “the pretty one” by classmates and potential suitors.

Keah’s reclaiming of the phrase came after reckoning with years of physical and emotional pain, insecurities, jealousy, reconciliation and ultimately, accepting her ridiculously talented, #DisabledAndCute existence, the hashtag that garnered the writer her first book deal (and earned her a spot on 2018’s The Root 100). Speaking with The Glow Up, Brown explains how she found her pretty—and why she neither desires nor will accept anyone’s pity.

The Glow Up: You have cerebral palsy, which you describe as a disability both visible and invisible. You also talk about having a part of your body “working for and against you at the same time.” For those of us unfamiliar, can you explain how that manifests for you?

Keah Brown: Well, CP [cerebral palsy] is different for everyone who has it. For me, I have a mild form of hemiplegia that impacts the right side of my body. This means my reaction times are slower, I have delayed motor function and the right side of my brain sends its signals to the right side of my body at a slower time as well. I also walk with a limp and tire quicker than your average non-disabled person. My body is working twice as hard to function. So, it’s working for me to live, which I love, but because of my disability, it’s also twice as much work so on the bad days it feels like it’s working against me.

Continue on to The Root to read the complete article.