Since its founding in 1992, Donate Life America’s (DLA) mission has been to raise essential awareness surrounding organ donation with a vision focused on saving lives.
Celebrated annually in April, National Donate Life Month was established to educate and encourage individuals to register as organ, eye, tissue, marrow and blood donors ─ also referred to as living donors. This observance period is also a time to honor heroic donors, donors’ families, recipients, caregivers and the clinical teams within this lifesaving community.
Understanding the Critical Need
In 2021, thanks to the generosity of dedicated supporters, transplant experts performed more than 41,000 organ transplants in the U.S. — a record amount. Plus, DLA saw organ donations from deceased donors set an annual record for the 11th consecutive year. Living donor transplants, which decreased significantly in 2020 due to the COVID-19 pandemic, also increased with over 6,500 living donor transplants performed.
Yet, over 100,000 people are now waiting for an organ transplant, while thousands more await cornea and tissue transplants. Another person in dire need is added to these lists every nine minutes. Sadly, transplant waitlists include more than 1,900 children under the age of 18. Additionally, alarming data shows that people of color make up nearly 60 percent of individuals awaiting an organ transplant. That’s why DLA is prioritizing the promotion of greater diversity in organ donation. Collectively, we all can make a difference!
Remarkably, a single organ donor can save up to eight lives; and tissue donors can reach up to 75 individuals. With an average of 17 people dying every day while waiting for their transplant gift, there has never been a greater need to become a donor.
credit: Donate Life America
Consider Organ Donation
Becoming a living donor is an option for those who wish to give the gift of life while they are still living a healthy life. Not only do living donations save lives but it also expedites an otherwise uncertain waiting period for those in need of a transplant from a deceased donor.
Choosing to become a donor or to make the decision on a loved one’s behalf can, understandably, generate an array of questions and emotions. DLA has a full support team with branches that extend countrywide to guide those considering organ donation through each step within the donation and receiving process.
Around the U.S., families and organizations are being united through these vital donations. Recipients have a renewed sense of living and are given a second chance at life. For donor families who are coping with grief and the hardships of loss, knowing they are able to honor the legacy of their loved ones as they live on in others offers them a special sense of peace.
“Without the organ donor, there is no story, no hope, no transplant. But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift” – United Network for Organ Sharing
Donate Life America will be launching its regional registration process for living donors sometime in 2022 to reach more prospective living donors. To become an organ donor, register at RegisterMe.org.
Users of the popular photo messaging app Snapchat can now access a brand new feature. Snap Inc. just launched (on April 5, 2022) the ASL Alphabet Lens which, as the social media company describes, is a first-of-its-kind Lens experience intended to inspire Snapchat’s 319 million users to start learning American Sign Language (ASL).
To build the originative product using augmented reality, Snap Inc. collaborated with SignAll, which develops cutting-edge tech for learning and translating sign language. This inclusive addition seems to be a natural expansion of the company’s effort to continually evolve opportunities for self-expression and connective communication.
Exclusively led by Deaf and Hard-of-Hearing designers at Snap Inc., called the Deafengers, the ASL Alphabet Lens teaches users to fingerspell their name, practice the ASL Alphabet and play games that put newly learned ASL skills to the test. The feature was built using groundbreaking hand-tracking technology that powered last year’s fingerspelling Lenses in honor of International Week of the Deaf.
There are approximately 48 million Deaf and Hard-of-Hearing people in the United States, according to the National Association of the Deaf. And now, thanks to the Deafengers, the social media app is working to bridge communication gaps through inclusion, accessibility and collaboration. A statement on Snap Inc.’s website read: “For native signers, in a world where linguistic inequity is prevalent, we believe AR can help evolve the way we communicate. We look forward to learning more from our community as we strive to continuously improve experiences for everyone on Snapchat.”
credit: Shutterstock
The launch of the app’s ASL Lens was spotlighted on NBC’s TODAY Show. Hopefully, viewers will soon see more disability-friendly advancements within the tech sector.
“This is a huge step forward,” Howard Rosenblum, CEO of the National Association of the Deaf, declared during TODAY’s segment. “It makes technology more accessible. And I hope that this sends a message to other tech companies. There is such a rich opportunity right in front of them to incorporate American Sign Language in a variety of ways.”
Accolades like that make it all worth it for the change-making designers at Snap Inc., such as Austin Vaday, who is one of the innovative Deafengers. “We want the world to understand that sign language is important, and that everyone signing is important,” Vaday shared with TODAY reporters. And shouldn’t we all want that?!
This isn’t the first time that Vaday has made significant strides to promote the use of ASL and disability inclusion as a whole. In 2018, he led a TEDx lecture titled “Sign Language is my Superpower.” Well, let’s hope Snapchatters are now more motivated than ever to also embody that superpower to help bridge the gap between our Deaf and hearing communities.
As a person with a disability, you may qualify for certain tax deductions, income exclusions, and credits. More detailed information may be found in the IRS publications referred to below.
When Ann Hanley was 49 years old, she noticed that she had persistent stiffness in her shoulders and her arms weren’t swinging normally when she walked. This became particularly pronounced when it affected her ability to travel to horse races with her husband, who manages a farm breeding champion racehorses. After visiting several specialists, a neurologist recognized she had Parkinson’s disease (PD).
The diagnosis was a shock, as Hanley had previously viewed PD as a disease that mainly affected older men. Initially, the idea of living with a progressive disease was overwhelming for Hanley — a self-described social butterfly — and so was maintaining her desire to be active.
PD is the second most common progressive neurodegenerative condition, affecting more than 1 million people nationwide, according to the Centers for Disease Control and Prevention. While it can’t be cured, medications are often prescribed to help manage symptoms. Unfortunately, some of these drugs are associated with side effects like involuntary movements and motor fluctuations. And over time, these medications can become less effective.
Now 63, Hanley is a veritable expert on her condition and an advocate for other patients. Seven years ago, she began volunteering at the University of Kentucky Hospital, shadowing a leading neurosurgeon who specialized in a PD treatment called Deep Brain Stimulation (DBS), which helps patients manage the motor symptoms of the disease when medication alone is no longer effective. DBS uses a small medical device implanted in the body and connected to leads that stimulate a portion of the brain to control the motor functions affected by movement disorders, including tremors, slowness and rigidity.
Ann Hanley, patient
Until recently, physicians have had to rely on older DBS technology. However, the Boston Scientific Vercise Genus DBS System, approved for use in 2021, is designed to customize therapy to match each patient’s specific needs and allow for flexible stimulation therapy delivery as the disease progresses. This is important, because PD advances over time, and no two people experience progressions the same way.
“Ultimately, with early enough intervention, DBS is a tool that can help people with PD reduce tremors, increase mobility, and even reduce the amount of medication needed — offering a reprieve from unpleasant side effects,” says Dr. Michele Tagliati, MD, director, Movement Disorders Program, Cedars Sinai (Los Angeles). “In particular, this therapy is designed with patient comfort and convenience in mind and gives physicians the ability to manage the ever-evolving needs of a patient as their Parkinson’s advances.”
Hanley knew it was time to try DBS herself when her walking had slowed, she was stooped over, her back hurt relentlessly and she was experiencing significant tremor in her right hand and leg. After undergoing the procedure, she was amazed at how DBS had helped her.
“When they turned on the device, I experienced an indescribable moment. My symptoms were suddenly reduced, and I felt more in control of my motion,” says Hanley.
With DBS, Hanley was able to completely come off her PD medications and experienced increased mobility. While results vary for different patients, she’s now able to walk, cycle and swim regularly, and attend every horse race with ease.
Today, Hanley is an advocate for DBS therapy and volunteers support to other patients, assisting during their appointments and even holding their hands during the DBS procedure. She’s also raised $3.5 million dollars through her fundraising efforts to support PD research at the University of Kentucky Hospital.
If you or a loved one have PD, consider talking to your doctor about the most appropriate treatment, and if DBS could be an option for you.
Source: StatePoint | Feature photo: Boston Scientific Corporation
A ketogenic diet, which primarily consists of foods like meat, fish, eggs, heavy cream, butter, oils and non-starchy vegetables — like pea pods, carrots, broccoli and peppers — may be safe for people with multiple sclerosis (MS). That is according to a preliminary study released on March 1, 2022, that will be presented at the American Academy of Neurology’s 74th Annual Meeting set to be held in person in Seattle, April 2 to 7, 2022 and virtually, April 24 to 26, 2022. The preliminary study also found people with MS may experience less fatigue and depression and report an improved quality of life while on the diet.
“A ketogenic diet, which is high in fats, adequate in protein, and low in carbohydrates, allows the body to utilize fat as its primary source of energy instead of sugars, thus mimicking a fasting state,” said study author J. Nicholas Brenton, MD, of the University of Virginia in Charlottesville and a member of the American Academy of Neurology. “A ketogenic diet helps lower blood sugar levels in people with type II diabetes and improve seizure control in people with epilepsy. However, it has not been well-studied in people with MS. Diet changes can be an inexpensive way to improve overall health, so our study explored whether eating a ketogenic diet is safe, tolerable and beneficial for people living with MS.”
The study enrolled 65 people diagnosed with relapsing-remitting MS. Relapsing-remitting MS is the most common form of the disease, marked by symptom flare-ups followed by periods of remission.
credit: Shutterstock
Study participants consumed a ketogenic diet for six months. They were instructed to consume two to three ketogenic meals per day consisting of one to two servings of low-carbohydrate proteins such as eggs, fish or meat alongside two to four tablespoons of fat, such as butter, oil, avocado, ghee or heavy cream, and one to two cups of non-starchy vegetables such as cucumbers, leafy greens or cauliflower. Snacks were also allowed as long as participants followed the maximum daily carbohydrate allowance of 20 grams. Adherence to the diet was monitored by daily urine tests to measure ketones, a metabolite produced by the body when it is burning fats. A total of 83% of participants adhered to the diet for the full study period.
Participants completed tests and surveys prior to the start of the diet and again at three and six months while on the diet to measure level of disability and quality of life.
Promising Results
Researchers found that not only did participants have less body fat after six months, they also had a decline in fatigue and depression scores.
On a quality-of-life survey, participants were asked questions like, “Did you have a lot of energy over recent weeks?” “Did you feel worn out?” “Have you been a happy person?” and “Have you felt downhearted and blue?” The survey provided a score for physical and mental health that can range from zero to 100, with higher scores representing better physical and mental health. Participants had an average physical health score of 67 at the start of the study compared to an average score of 79 at the end. Participants had an average mental health score of 71 at the start of the study compared to an average score of 82 at the end.
Scores also improved on a common MS disease progression test. On a scale of zero to 10, with a score of one representing no disability, two representing minimal disability and three representing moderate disability but still able to walk, the average participant score at the start of the study was 2.3 compared to 1.9 at the end. On a six-minute walking test, participants walked an average of 1,631 feet at the start of the study compared to 1,733 feet at the end.
Researchers also took blood samples and found participants had improvements in the levels of inflammatory markers in the blood.
photo: shutterstock
“Our study provides evidence that a ketogenic diet may indeed be safe and beneficial, reducing some symptoms for people with MS, when used over a six-month period,” said Brenton. “However, more research is needed because there are potential risks associated with ketogenic diets, such as kidney stones, digestive issues and nutrient deficiencies. It is important that people with MS consult with their doctor before making any big changes to their diet, and that they be regularly monitored by a physician and registered dietitian while on a ketogenic diet.”
A limitation of the study was the lack of a control group of people with MS who consumed their regular, non-ketogenic diet.
The study was supported by the National Center for Advancing Translational Sciences of the National Institutes of Health and the ZiMS Foundation.
If you find yourself using a brighter light to read, holding your favorite book at arm’s length, or squinting to see up close, you are not alone. Approximately 128 million people in the United States have presbyopia, or age-related blurry near vision, a common and progressive eye condition affecting most people over 40.
As you hit middle age, the lenses of your eyes become less flexible, and you may find it more difficult to see up close. Presbyopia can be diagnosed through a basic eye exam by an optometrist or ophthalmologist.
Toni Wright is one of the many people who experience age-related blurry near vision. “As I’ve gotten older, my vision has changed, and it has become almost impossible to see clearly up close unless I wear my readers. After speaking with my doctor, I learned that I have presbyopia. Realizing that I needed to start using readers showed me how important it was to address this condition.”
Until now, some of the options to manage presbyopia have been reading glasses, contact lenses or surgery. The U.S. Food and Drug Administration recently approved the first and only prescription eye drop to treat presbyopia, or age-related blurry near vision, in adults. The once-daily prescription eye drop called VUITY (pilocarpine hydrochloride ophthalmic solution) 1.25%, improves near and intermediate vision without impacting distance vision.
credit: Family Features
A Clear Plan
As you age, it’s important to care for your eye health. The following are some easy steps you can take:
Visit your eye doctor regularly. Eye exams can help uncover age-related eye conditions like presbyopia. It’s a normal part of getting older and important to spot early on.
Give your eyes a rest. It’s easy to get lost in reading or work when you’re looking at screens all day. Setting a timed reminder can help give your eyes a break every 20 minutes. To reduce eye strain, try the 20-20-20 rule: Every 20 minutes, look 20 feet in front of you for 20 seconds.
Eat a healthy, balanced diet. Your diet should include a variety of proteins, dairy, fruits, and vegetables. Eating fish high in omega-3 fatty acids, such as salmon, tuna, and sardines can also help your eyes.
Protect your eyes from the sun. Wear quality sunglasses that offer good UV protection to protect your eyes from harmful solar radiation. Don’t just save them for the summer months – it’s important to wear them even on cloudy days and during winter months.
Scheduling an appointment with an eye care professional is the first step, and if you’re experiencing age-related blurry near vision, talk to your eye care professional to see if what treatment is best for you.
Nearly 122 million people in the United States are living with diabetes or prediabetes. This condition is the leading cause of kidney disease – where the kidneys lose function over time until they fail. In fact, one in three adults with diabetes has developed kidney disease.
Raising awareness about the link between these two chronic conditions is the first step to improving the health of people at risk of kidney failure. That’s why health care provider DaVita Kidney Care has collaborated with the American Diabetes Association (ADA) to help increase early detection and risk reduction for kidney disease.
“Our partnership with DaVita has created a platform for the American Diabetes Association to get information to those who need it most,” said Dr. Bob Gabbay, chief scientific medical officer for the ADA. “We’re working together to build awareness about the connection between diabetes and kidney disease – and to help people with these conditions manage their health.”
credit: Brandpoint
Understanding the Issue
Fifty percent of people with very low kidney function don’t know they have kidney disease. By the time many people discover the state of their health, their kidneys have failed and they need a transplant or dialysis treatment to live.
“We’re committed to addressing kidney failure holistically, which includes getting ahead of kidney disease to help patients receive preventative care,” said Dr. Jeff Giullian, chief medical officer for DaVita. “We’re also ensuring there are no-cost tools available to help people address and manage these conditions before they progress.”
Early detection of diabetes is proven to prevent life-altering complications like kidney failure. Testing is a simple but essential tool to detect risk for diabetes and monitor the disease’s progress. For those living with diabetes, it’s critical to get your kidneys checked regularly by a doctor through simple blood and urine tests.
Education is Available
Because people living with diabetes are at greater risk of developing kidney disease, the ADA is helping to get the word out about DaVita’s Kidney Smart classes. These no-cost classes are open to anyone and led by kidney experts. They provide communities with an overview of kidney disease risks, detection information, and diet and nutrition resources.
credit: Shutterstock
Diet is a connecting point between diabetes and kidney disease, as a key driver of type 2 diabetes and a critical part of maintaining kidney health. Through the ADA’s Health Equity Now initiative, DaVita is working with the ADA to help provide adults with type 2 diabetes with lifestyle guidance such as maintaining a healthy weight, delivered through on-demand education. Focusing on exercise and medications along with a healthy diet are among the best early treatments for kidney disease.
It’s more important than ever to take these necessary steps towards better health and wellness for everyone.
Celebrating small wins when it comes to your health is just as essential as prevention. Small wins become big victories and little changes turn into lifelong habits. Organizations like the ADA and DaVita Kidney Care are here to help celebrate these wins. Through awareness, education, and illness management, we can all work together to lower the number of Americans with diabetes and kidney disease. We can create a better life for those living with these conditions!
Originally created in 1982 in response to the injury of Henry Stifel, the Christopher & Dana Reeve Foundation – first conceived as the Stifel Paralysis Research Foundation, a community-driven nonprofit dedicated to curing spinal cord injury (SCI) – marks its 40th anniversary (2022). Over the last four decades, the Reeve Foundation has evolved to become the premier national, paralysis-focused nonprofit organization working to address a dual care-cure mission – providing free, comprehensive resources to help those impacted by SCI and paralysis as it advances the most promising scientific advances toward cures.
As the Foundation marks this milestone, it celebrates 40 years of progress and the seismic shift that it helped steer to move the field of SCI research to its current state, whereby scientists agree that paralysis cures are not a matter of “if” but “when.”
Looking Back to the Start
Forty years ago, on March 12, Henry Stifel, then 17-years-old, was in a car accident that shattered his vertebrae, leaving him paralyzed from the chest down. When his parents, Hank and Charlotte Stifel, pressed doctors about what came next, the answers reflected the widespread belief that SCIs were untreatable. Christopher Reeve was already Superman, but the Reeve Foundation wouldn’t exist for another 14 years. So, the Stifels decided to build their own, and the Stifel Paralysis Research Foundation launched later that year.
In the mid-1980s, Hank brought the Foundation under the umbrella of the American Paralysis Association (APA), where he helped establish an external scientific advisory council to review and advise its grant awards, funding research in a way that was completely novel to SCI – a “laboratory without walls.” The scientific rigor helped expand the number of scientists and academics pursuing spinal cord research and encouraged the innovative work that would eventually upend the notion that there was nothing to be done for those living with paralysis.
Hank and Henry Stifel – Christopher & Dana Reeve Foundation started as a grassroots movement by pioneers Charlotte & Hank Stifel. credit: Christopher and Dana Reeve Foundation
When Christopher Reeve was injured in 1995, the APA was one of the first places that he and Dana Reeve turned to for guidance. Soon after, in 1996, he started the Christopher Reeve Foundation. By 1999, the APA and Christopher’s Foundation came together as the Christopher Reeve Paralysis Foundation, which added Dana’s name to its moniker after her untimely death in March 2006.
From the Graveyard of Neuroscience to Cures in Sight
The Reeve Foundation started as a grassroots movement by pioneers who refused to accept the long-standing dogma that the spinal cord, once injured, could never be repaired. Because of this view, SCI research was in its infancy in the 1980s and nicknamed the “graveyard of neurobiology.” Today, however, the Foundation has funded more than $140 million of research around the world. By uniting the brightest minds in the field, the Foundation helped usher a new era of scientific inquiry focused on developing and delivering real-world treatments that would push the world toward real cures for SCI.
“The Reeve Foundation substantially changed perceptions about what was possible for spinal cord injury recovery and regeneration,” says James D. Guest, M.D., Ph.D., Professor, Department of Neurological Surgery, The Miami Project to Cure Paralysis, and adviser to the Foundation. Through its support of cutting-edge basic SCI science and its role as a convener and credible arbiter of strong research, the field began to shift from an obscure specialty practiced by a handful of dedicated scientists in isolated labs to one of the most exciting and collaborative areas of neuroscience. Further, an important step was taken towards actual clinical implementation of discoveries through the establishment of the North American Clinical Trials Network (NACTN). The network has enrolled more than 1000 subjects to a data registry, and participated in the largest international clinical trial for SCI of the 21st Century, testing the drug riluzole. NACTN actively collaborates with other clinical trial networks in Europe and Canada.
Building on a wealth of basic science discovery that had begun to unravel some of the most complex mechanisms of SCI and paralysis, in the mid-2000s, the Foundation zeroed in on an area of study with the potential to dramatically change what it means to live with paralysis: epidural stimulation, by which continuous electrical currents are applied at varying frequencies and intensities to specific locations on the spinal cord to activate the nerve circuits and augment small residual signals from the brain. Working with the earliest pioneers in this area, the Foundation launched The Big Idea with the University of Louisville in 2014 – a momentous step toward the expansion of its mission-driven outlook from just one cure to many, and a groundbreaking study that underscores the Foundation’s commitment to translating scientific results into tangible, quality of life gains for patients in the here and now.
credit: Christopher and Dana Reeve Foundation
The Big Idea is helping participants living with SCI dramatically improve their quality of life through improved cardiovascular health, bladder control, and other autonomic functions – and voluntary movement, including the previously impossible task of walking over ground. Improved cardiovascular function is anticipated to be the first market indication pursued through the FDA for the technology, with data from the Big Idea supporting that application. To date, $9.4 million funding for The Big Idea from the Reeve Foundation has been leveraged by the University of Louisville researchers to generate $31 million in adjoining financial support for related research.
More recently, the Foundation has begun making forays into research-driven equity partnerships, such as with ONWARD, a Netherlands-based company that has developed breakthrough technologies currently in global clinical trials that deliver individualized transcutaneous stimulation to the spinal cord in combination with intensive rehabilitation to improve arm and hand recovery (Up-LIFT study). A second exciting program uses targeted, programmed epidural stimulation of the spinal cord to restore movement and other functions. In February 2022, Nature Medicine published the results of the STIMO-BRIDGE Study, which highlights the use of ONWARD’s technology to enable people with even the most severe forms of spinal cord injury to walk, stand, cycle, and swim again.
In 2021, the Reeve Foundation created a strategic partnership with the UK’s International Spinal Research Trust (ISRT) to co-develop a research strategy with a joint focus on chronic injury, combination approaches and clinical translation. This alliance, inspired by the speed at which solutions for COVID-19 have been delivered, seeks to take a coordinated, global approach to accelerate the processes of bringing meaningful treatments to those living with SCI. At the core of the alliance is a collaborative blueprint that aims to establish a framework for decision-making, planning and governance to advance the most promising therapies from the preclinical stage through clinical trials and into medical practice. To mark the alliance, ISRT and the Foundation agreed to co-fund a newly created translational award, totaling $1.3 million, focused on restoring function in chronic SCI through novel circuit formation.
These joint Reeve-ISRT grant awards are the first step toward a visionary, collaborative approach to its research platform. Working closely with ISRT, the Foundation is initiating a research paradigm that seeks to fund the most promising science along the research continuum and build a business infrastructure with the power to speed, streamline and support the path from discovery to human clinical trial testing.
“No other entity in SCI is engaged in the scientific pipeline at both the scientific and business support perspectives. While funding agencies support portions of the research continuum, they lack the ability to help advance research from the lab to bedside, and there is little critical assessment of product marketability,” says Maggie F. Goldberg, President & CEO of the Reeve Foundation. “The Reeve Foundation is committed to filling these core gaps that have to date stymied the field.”
Support for Those Living with Paralysis
In 2002, the Foundation’s National Paralysis Resource Center (NPRC) opened its doors with the leadership and vision of Dana Reeve, who, with Christopher, struggled to find resources to help their family build a new normal after his spinal cord injury. Through the NPRC, the Reeve Foundation offers a free, comprehensive, national source of informational support for people living with paralysis – from SCI, multiple sclerosis, stroke, ALS, traumatic brain injury, and other causes – and their caregivers. The NPRC is focused on helping clients overcome the day-to-day challenges of paralysis while trying to lead independent and fulfilling lives.
credit: Christopher and Dana Reeve Foundation
Funded through a cooperative agreement with the U.S. Department of Health and Human Services (HHS) and managed under the Administration for Community Living (ACL), the NPRC has served over 112,000 individuals living with paralysis, their families, and caregivers with one-on-one assistance since its inception. Visits to the Foundation’s website average three million per year and provide individuals with a wealth of information, including fact sheets, tool kits, a 400-page Paralysis Resource Guide and more, all translated into 12 additional languages. Other services include:
Information Specialists, who are trained to help anyone – from newly paralyzed individuals and their family members to persons who have lived with disabilities for decades – as they attempt to navigate their changing world and the services available to them;
The Quality of Life Grants Program, pioneered by Dana Reeve, has awarded approximately 3,500 nonprofit organizations with more than $36 million in funding to impact and empower people living with paralysis, their families and caregivers.
A Magical Evening Returns to Honor 40 Years of Progress
As the Foundation marks its anniversary, it looks forward to the return of its annual gala, A Magical Evening, which was canceled for two years due to the pandemic. This fall, the Reeve Foundation will celebrate its founders and 40 years of progress inspired and achieved through the courage, compassion and commitment of their leadership, values that are carried forward by the Reeve community today.
Fierce advocate, Julie Neustadt, will receive the Dana Reeve Hope Award at the event. Neustadt is one of the main driving forces in the Chicago area supporting numerous community and fundraising events like Celebrate Chicago and the Chicago Marathon.
Eric LeGrand, who will receive the Christopher Reeve Spirit of Courage award at the event, epitomizes the founders’ conviction that nothing is impossible. “I believe Christopher Reeve started something, and I’m supposed to finish it,” says the former Rutgers University football star who became paralyzed in a 2010 game. Team LeGrand, a partnership with the Reeve Foundation, was created in 2013. “The hope today among the spinal cord injury community is palpable. Through the work of the Foundation and its partners, we believe in the cures that are now, finally, in sight.”
The Marlene Meyerson JCC Manhattan’s (MMJCCM) ReelAbilities Film Festival (New York) announced the full lineup of films and select special events for its 14th annual festival, which returns as a hybrid event in person and virtual from April 7 through April 13, 2022. Tickets can be purchased at reelabilities.org/newyork.
ReelAbilities Film Festival is the largest festival in the U.S. dedicated to promoting awareness and appreciation of the lives, stories, and artistic expressions of people with disabilities. Initiated in New York at the Marlene Meyerson JCC Manhattan in 2007, the festival has grown to present international and award-winning films by and about people with disabilities in multiple fully accessible locations throughout the New York Metro Area. At the 2022 festival, post-screening discussions, presented by Pfizer, and other engaging programs will bring together the community to explore, discuss, embrace, and celebrate the diversity of our shared human experience.
What to Expect
The 14th Annual ReelAbilities Film Festival will feature in-person screenings and virtual access of a dozen feature films and over twenty-five shorts, plus panels and Q&As with filmmakers and artists. The festival’s Opening Night selection will be Olivier Nakache and Éric Toledano’s acclaimed film THE SPECIALS, starring Vincent Cassel, Reda Kateb, Helene Vincent, and Brian Mialoundama. It will screen on April 7 at 7 pm at the IAC Screening Room, co-presented by Vimeo and followed by a Q&A with special guests from the film.
credit: Marlene Meyerson JCC Manhattan & ReelAbilities Film Festival
The Closing Night film will be the New York premiere of Brian Malone and Regan Linton’s documentary IMPERFECT, which follows an award-winning theater group consisting of actors who live and perform with the uniqueness of disability as they set out to claim their place in the spotlight with a production of the beloved musical Chicago. Following these actors’ lives inside and outside the theater, curtains are drawn open to overlooked talent and the power of the human condition in its many forms. It will screen on April 13 at 7 pm at the Marlene Meyerson JCC Manhattan.
As a part of the 2022 festival, ReelAbilities is proud to launch an exciting initiative: The Film and Television Accessibility Summit on April 11 and 12. The hybrid summit will discuss accessibility as a creative asset at all phases, development through exhibition, and explore beyond the basics into progressive best practices. Industry leaders including disabled creatives will share knowledge and experience, providing participants with the tools to elevate accessibility and open pathways to deeper inclusion. Available both in-person and virtually provided by Eventive.
ReelAbilities is also proud to launch a groundbreaking streaming site with access to some of the best films from past festivals. Launching April 13, many of the festival’s past films will now be available nationwide, with unprecedented accessibility aids. Coming soon to: www.reelabilitiesstream.org
“This year’s lineup of films is our largest and most diverse program to date,” says Isaac Zablocki, Director and Cofounder of ReelAbilities, and Senior Director of Film Programs at MMJCCM. “We always look for authentic stories, but this year, we put an extra focus on stories in first person, that are actually told by people with disabilities.”
The festival is presented with full accessibility including Captions and Audio descriptions for all films, and CART for all conversations as well as ASL.
The ‘Amazing Grace’ film will show at ReelAbilities. credit: ReelAbilities
This year’s New York partner venues include the Marlene Meyerson JCC Manhattan’s newly renovated Goldman Sonnenfeldt Auditorium, The IAC Building, The Intrepid Sea, Air & Space Museum, The Maysles Documentary Center, The Museum of the Moving Image, The Jacob Burns Film Center, and David Rubenstein Atrium at Lincoln Center, among others. All films will be presented virtually as well.
This year, lead sponsors for ReelAbilities includes: Pfizer, sponsoring the accessible conversations; AMC Networks, sponsoring the short film selections and accessibility; as well as Eventive, sponsoring the virtual elements of the summit. Support from the community and major corporations allows ReelAbilities to raise the bar on accessibility and shine a spotlight on the underserved.
FESTIVAL LINE UP:
AMAZING GRACE
Dir. Lynn Montgomery
United States | 55 min | Documentary
Talented young musician Gracie Smith, proficient in three instruments, was on her way to the world famous Berklee College of Music. On her 17th birthday, she developed Acute Flaccid Myelitis (AFM), a rare polio-like disease. Determined to persevere, Gracie set out to find new ways to create art, driven by her philosophy: “My only limitation will be my imagination.” Featuring Justin Hurwitz, Academy Award–winning composer of La La Land.
Disabilities Represented: Acute Flaccid Myelitis/Quadriplegia, Guillain-Barre syndrome/Paraplegia
ANY GIVEN DAY
Dir. Margaret Byrne
United States | 93 min | Documentary
Filmmaker Margaret Byrne documents the lives of three defendants with mental illness going through a specialized probation program designed to focus on mental health. Byrne’s own mental health condition becomes tied in to the larger picture of family relationships, struggles, and triumphs.
Disabilities Represented: Mental illness
HERE. IS. BETTER.
Dir. Jack Youngelson
United States | 95 min | Documentary
In this personal documentary, the intimate lives of veterans with post-traumatic stress disorder (PTSD) are shared inside hopeful therapy sessions. From men to women, from the Vietnam War to the present day, stories are unlocked that dispel myths about PTSD and place focus on veterans’ journeys to a place of healing. Featuring former presidential hopeful Jason Kander.
Disabilities represented: PTSD
The ‘Here.Is.Better’ film will show at the ReelAbilities Film Festival. credit: ReelAbilities
IMPERFECT
Dir. Brian Malone, Regan Linton
United States | 78 min | Documentary
An award-winning theater group consisting of actors who live and perform with the uniqueness of disability sets out to claim their place in the spotlight with a production of the beloved musical Chicago. Following these actors’ lives inside and outside the theater, curtains are drawn open to overlooked talent and the power of the human condition in its many forms.
Disabilities represented: Paralysis, Cerebral Palsy, Blindness, Autism, Multiple Sclerosis, Polio
ME TO PLAY
Dir. Jim Bernfield
United States | 72 min | Documentary
When faced with growing symptoms of Parkinson’s disease, two professional actors set forth to put on an off-Broadway production of Samuel Beckett’s Endgame, a play Beckett wrote as a metaphor for living with a disease. Through the artistic process, these actors find humor in struggle and power in the soul.
Disabilities represented: Parkinson’s disease
MOVE ME
U.S. DISTRIBUTOR: PBS POV
Dir. Kelsey Peterson, Daniel Klein
United States | 81 min | Documentary
At age 27, dancer Kelsey Peterson dove into Lake Superior and emerged paralyzed. Now, she faces the opportunity to dance again, as she works to redefine who she is and rediscover hope in the body and spirit.
Disabilities represented: Spinal cord injury/disorder
NO BONE: SCARS OF SURVIVAL
Dir. Marc Schiller
UK | 90 min | Documentary
Marc Schiller, a communications expert with a long career promoting street art, music, and film, suffers a stroke that leaves him with aphasia and some cognitive deficits. With the help of family, Marc chronicles his career in the NYC art scene, his path toward recovery, and the love that surrounds him.
Disabilities represented: Stroke victim
ONLY I CAN HEAR
Dir. Matsui Itaru
Japan | 54 min | Documentary
In search of a place between two disparate worlds, three teenage Children of Deaf Adults (CODAs), come of age in the vibrant, loud Deaf community. Grappling with issues of prejudice, leading double lives, and familial bonds, this documentary asks what it means to exist between different cultures and how you can define your sense of identity.
Disabilities represented: Children of Deaf Adults
The ‘Only I Can Hear’ film will show at the ReelAbilities Film Festival. credit: ReelAbilities
POPPY
Dir. Linda Niccol
New Zealand | 98 min | Narrative
Poppy, a young woman with Down syndrome, is set on becoming a motor mechanic. Unfortunately, her overly protective brother keeps jamming the wheel of that ambition. When an opportunity arises for Poppy, she sets out to prove her independence and achieve her dream.
Disabilities represented: Down syndrome
THE BLIND MAN WHO DID NOT WANT TO SEE TITANIC
SXSW 2022
Dir. Teemu Nikki
Finland | 81 min | Narrative
Jaako, a blind wheelchair user with multiple sclerosis, forges an active long-distance relationship with Sirpa over the phone, without ever meeting in person. When Sirpa reveals shocking news, Jaako decides to undergo a real-life odyssey to meet her. Jaako travels through five different locations, encountering strangers both helpful and harmful, on his way to the one he loves.
Disabilities represented: Multiple sclerosis, Blindness
THE OTHER TOM
DISTRIBUTOR: OUTSIDER PICTURES
Dir. Rodrigo Pla, Laura Santullo
Mexico | 111 min | Narrative
Elena is a single mother attempting to manage her son Tom’s behavioral issues. When Tom is diagnosed with Attention Deficit Hyperactive Disorder (ADHD), Elena becomes aware of the possible side effects of his medication. With Social Services threatening to remove him from her custody, Elena fights for the well-being of the only person she has.
Disabilities represented: ADHD
THE SPECIALS | OPENING NIGHT
Dir. Olivier Nakache, Éric Toledano France, Belgium | 114 min | Narrative
Close friends Bruno and Malik have combined their nonprofits to train youth in underprivileged areas to be caregivers for autistic children and teens. However, the program lacks official certification and is under the watchful eye of the General Inspectorate of Social Affairs. Despite this looming threat and internal conflicts, the power of unity, compassion, and acceptance within the program prove exceptional.
Disabilities represented: Autism
SHORT FILMS
6,000 WAITING
Dir. Michael Joseph McDonald
United States | 29 min | Documentary
Three Georgians with cerebral palsy fight to live life on their own terms. But as their families bond, state policy tries to tear them apart.
Disability represented: Cerebral palsy
A CRITTER FABLE
Dir. Grace Fisher
United States | 8 min | Animation
A caterpillar who can’t become a butterfly discovers he can still add color to the world in his own special way. Featuring music and artwork by Amazing Grace star Grace Fisher, with critters created by children with disabilities in Santa Barbara.
Disability represented: Down syndrome, Autism
‘A Critter Fable’ to show at ReelAbilities. credit: ReelAbilities Film Festival
A MORNING WITH AROHA
Dir. Nicholas Riini
New Zealand | 11 min | Narrative short
Aroha, an imaginative young girl with Down syndrome, sets out to share her creativity with her neighbors.
Type of disability: Down syndrome
HOLD ON TO ME
Dir. Luca Arcidiacono
Italy | 20 min | Narrative short
Filippo did not expect to have to spend the day with Alice, a charming young girl with Down syndrome he meets on a train. On their journey, an unexpected bond forms between the two.
Disability represented: Down syndrome
AIMEE VICTORIA
Dir. Chrystee Pharris
United States | 11 min
On the day of their anniversary, a couple separated by lockdown finds their relationship tested. A story about the power of love in the toughest of times.
Disability represented: Deafness
BEAT LINGO
Dir. Jose Navas
United States | 16 min | Narrative Short
Marcus, a reserved teenager with mutism, attends public school for the first time in his life. Pushing through trials and prejudices of the past and present, Marcus uncovers a special gift he’s been hiding from the world.
Disability represented: Mutism
BEAUTIFUL
Dir. Mulan Fu
United States | 6 min | Animation
A teenage girl undergoes transformative growth as she witnesses her mother’s fight against breast cancer.
Disability represented: Breast cancer
BORDERLINE COFFEE
Dir. Jeff Ayars
United States | 10 min | Short
A young woman overtaken by anxiety battles through her inner thoughts when she sets out to accomplish what would seem to be a simple task: buying a cup of coffee.
Disability represented: Borderline personality disorder
DAVEY’S LULLABY
Dir. Adam Douglas Deyoe
United States | 9 min | Animation
Davey, a cheerful and loving man with Down syndrome, finds his future thrown into uncertainty when his elderly mother passes away.
Disability represented: Down syndrome
DAWN
Dir. Timon Birkhofer
United States | 5 min | Documentary
Five unique individuals take us on a journey where their achievements shine beyond preconceived ideas of what is possible.
Disabilities represented: Five different physical disabilities
DWARFO-PSYCHOSIS
Dir. Maria DiDomenico
United States | 5 min | Narrative Short
As fraternal twins Peter and Pat celebrate their 40th birthday, a huge twist is revealed.
Disability represented: Dwarfism
FREEBIRD
Dir. Michael Joseph McDonald, Joe Bluhm
Canada | 5 min | Animation
A boy with Down syndrome learns to navigate the world with a loving mother, an absent father, a classroom bully, and a lifelong crush.
Disability represented: Down syndrome
ILLUSTRATING SAM NEWTON
Dir. Lily Drummond
United States | 28 min | Narrative short
A viral online photographer wants to remain anonymous in order to hide parts of their identity. When a fan from the other side of the world makes a connection, they learn to accept themselves by sharing the universal language of art.
Disability represented: Deafness
LOUIS’ SHOES
Dir. Théo Jamin, Kayu Leung, Marion Philippe, Jean-Géraud Blanc
France | 5 min | Animation
Louis, an 8-year-old autistic boy, introduces himself at his new school in this imaginative tale about difference and acceptance.
Disability represented: Autism
LOCKDOWN TALE
Dir. Cameron Carr, Marie Trudolubova
United Kingdom | 6 min | Animation
A behind-the-scenes documentary on the making of Wawel Dragon. When the pandemic forces his university’s studios to shut down, animation student Cameron Carr sets to work creating his very own studio in his bedroom.
Disability represented: Autism
MY OWN LANDSCAPES
Dir. Antoine Chapon
United States | 19 min | Documentary
Taking the technology used for Virtual Reality military simulation, a veteran transforms the originally violent landscape into a space of nature and healing.
Disability represented: PTSD
‘My Own Landscapes’ to show at ReelAbilities. credit” ReelAbilities
NICK LIGHTNING
Dir. Pat Taggart
United States | 27 min | Documentary
At a young age, Nick Fergus found joy in creating rock star alter ego “Nick Lightning.” Now diagnosed in a world of rising Autism awareness, Nick Lightning challenges ideas of what it means to live a happy, fulfilling life.
Disability represented: Autism, ADHD
PROSOPAGNOSIA
Dir. Steven Fraser
United Kingdom | 10 min | Animation, Documentary
Unraveling sketchbooks, photographs, and diaries with unique animation, Prosopagnosia explores what it means to live with face blindness and Autism, and investigates concepts of intimacy, communication, and memory.
Disability represented: Face blindness, Autism
SEE THROUGH
Dir. Eyal Resh
United States | 9 min | Narrative Short
Tensions rise between a young deaf couple discovering they are about to become parents. Featuring 2018 Tony nominee and Eternals star Lauren Ridloff.
Disability represented: Deafness
SIGNS AND GESTURES
Dir. Itandehui Jansen
United Kingdom | 12 min | Narrative Short
Clara, a blind florist, has been chatting with Simon through a dating app. They arrange to meet in person. However, during their first date, an unexpected misunderstanding arises.
Disability represented: Blindness, hearing impairment
SILENT WORLD
Dir. Charlie Dennis
United Kingdom | 10 min | Narrative Short
When threatened by a deadly gas, humanity is forced to live underground. While everyone else adjusts to their new way of life, deaf rapper Signkid struggles with loss and isolation in an increasingly inaccessible world.
Disability represented: Deafness
THE BODY IS A HOUSE OF FAMILIAR ROOMS
Dir. Eloise Sherrid, Lauryn Welch
United States | 10 min | Animation, Documentary
A magical-realist exploration of the life of a man with chronic illness through footage and paintings.
Disability represented: Ehlers-Danlos syndrome
THE MULTI
Dir. Storm Smith, Natasha Ofili
United States | 18 min | Narrative Short
An isolated deaf woman fights to maintain control when past demons threaten to destroy the world of order she has built.
Disability represented: Deafness
TRYING
Dir. Juan Manuel Montilla “Langui”
Spain | 15 min | Narrative Short
Every day, Santiago walks with his son Diego to and from school. But today is different. Diego is no longer a boy, walking is difficult for Santiago, and father and son will need to have a truthful discussion that both hurts and heals.
Disability represented: Physical disability
WAWEL DRAGON
Dir. Cameron Carr
United Kingdom | 6 min | Animation
An animated retelling of the classic Polish folktale by Cameron Carr (Strange), Wawel Dragon features a dragon, knights, and the unexpected heroism of a simple shoemaker.
Disability represented: Autism
WHEELS
Dir. Smari Gunn
Iceland | 6 min | Narrative Short
When a homeowner and master burglar become aware they are in separate parts of the house, a frantic game of cat-and-mouse ensues.
Disability represented: Muscular Dystrophy/Wheelchair user
Every March, the Brain Injury Association of America (BIAA) leads the nation in recognizing Brain Injury Awareness Month. It’s a time to acknowledge and support 5.3 million Americans living with a permanent brain injury-related disability and the caregivers, family members, professionals, and advocates who make up the brain injury community.
Acquired brain injuries (ABIs) are a serious public health issue, with 3.6 million new injuries reported each year and likely many more that go undiagnosed, unreported, and untreated. Brain Injury Awareness Month shines a light on this important and sometimes overlooked public health issue.
In 2022, BIAA continues its #MoreThanMyBrainInjury campaign, which centers the stories of brain injury survivors to increase understanding, reduce stigma, improve care, and showcase the diversity in this community. Individuals impacted by brain injury are invited to participate on a personal level through storytelling, social media posts, custom apparel, media outreach, and legislative advocacy.
credit: Brain Injury Association of America
“Our goal, with this campaign, and as part of our work generally, is to support community members in expressing their unique experiences,” said Susan H. Connors, BIAA’s president and chief executive officer. “#MoreThanMyBrainInjury is about advancing the narrative that individuals with brain injuries are just that – individuals.”
Megan Stier Shares Her Personal TBI Narrative
One such individual is Megan Stier, who shared her story of brain injury as a result of concussion in high school. Stier described herself in a powerful video as “an over-achiever” before the injury with dreams of being a stage performer. After the concussion, her doctors told her that this was no longer realistic, and she faced misunderstanding and bullying from her peers. Instead of accepting their lowered expectations, Stier has gone on to become an advocate, motivational speaker, and performer.
“Despite my brain injury, I’ve been able to do everything I wanted to do, and everything I was told I couldn’t do,” said Stier. “It might’ve been a little harder. I might’ve had to put work into it than other people. I used the tools that I learned from my brain injury to really thrive and achieve everything I want to achieve.”
Join The Conversation
Information about BIAA’s #MoreThanMyBrainInjury campaign, including additional stories like Stier’s and ways to participate throughout Brain Injury Awareness Month, is available at biausa.org/morethanmybraininjury.
Individuals in need of resources and support after brain injury should contact BIAA’s National Brain Injury Information Center at 1-800-444-6443.
