It’s estimated that anywhere from 75-90% of people with cerebral palsy (CP) have vision problems, and research aimed at better understanding vision in people with CP could help improve care and quality of life for these individuals. To wrap up our third season, Dr. Marie McNeely hosts this Research Roundup episode featuring three recent studies examining aspects of vision in people with CP. These studies highlight that cerebral (brain-level) visual impairment can change over time in people with CP, strabismus is very common in CP and affects millions of people worldwide, and different aspects of a person’s vision relate to and can impact how they move and use their hands.

Jocelyn Cohen, CPARF’s Vice President of Education, emphasizes the relevance of vision research and discusses why these studies matter for people with CP.

The three studies featured in this episode weren’t funded by CPARF, but they represent other interesting, innovative work that investigators are doing in the CP research space.

Links to the abstracts of the studies featured in this episode:

https://pubmed.ncbi.nlm.nih.gov/39316724/

https://pubmed.ncbi.nlm.nih.gov/38635869/

https://pubmed.ncbi.nlm.nih.gov/39018791/

Substantial and growing evidence supports the wide-ranging benefits of physical activity, but cerebral palsy (CP) and other disabilities can affect how a person engages in physical activity and what activities they should do to maximize their benefits. In this Research Roundup episode, Dr. Marie McNeely talks about three new studies that focused on physical activity in people with CP. The results from these studies give insights on physical activity and exercise in children with CP who can walk, children with CP who can’t walk, and adults with CP. The studies also draw attention to gaps in the literature that need to be addressed with future research. To highlight why these studies matter for people with CP, Jocelyn Cohen, CPARF’s Vice President of Education, shares her perspectives.

The studies featured in this episode weren’t funded by CPARF, but they represent other interesting, innovative projects that investigators are doing in the CP research space.

Links to the abstracts of the studies featured in this episode:

https://pubmed.ncbi.nlm.nih.gov/39363968/

https://pubmed.ncbi.nlm.nih.gov/38758603/

https://pubmed.ncbi.nlm.nih.gov/39180329/

Adaptive sports are filled with thrilling moments and jaw-dropping athletic feats from amazing athletes. But these sports and the phenomenal athletes who are at the top of their game remain a relatively untapped source for game developers. Pascal Clarysse kicks off this episode by sharing more about Big Karma, one of the startup companies in the 2024 Remarkable US Accelerator Program. As a founder of Big Karma, Pascal is passionate about gaming and dedicated to improving representation of disabled people in gaming and entertainment. Their flagship game, Phenoms, features a diverse group of real-life Paralympic athletes who leverage their disabilities to win.

Later, you’ll hear from Matt Scott, a five-time Paralympic athlete and two-time Paralympic Gold Medalist for Team USA Wheelchair Basketball. Matt is also an Olympics/Paralympics Presenter for NBC and Executive Director of Fly Without Limits, a global disability empowerment organization. He’s had a chance to play the game Phenoms from Big Karma and is one of the playable characters in the game as well. Matt shares how becoming a character in this game has been a dream come true, and how the game has the potential to shatter stereotypes and change people’s perceptions of disabilities.

The separate parts of our body are connected, and problems in one area can affect other aspects of our physical and mental health. Researchers are working to better understand the relationships between different symptoms of cerebral palsy (CP) and the impacts these symptoms can have on the everyday lives of people with CP. In this Research Roundup, Dr. Marie McNeely discusses three new research papers that examined relationships between posture and other aspects of CP like pain, balance, and quality of life. These studies investigated postural asymmetry, spine and pelvis alignment, and rib-on-pelvis deformity in people with CP, and their results provide valuable data to inform treatment approaches and future research. CPARF’s Vice President of Education, Jocelyn Cohen, also discusses why results from these new studies matter for people with CP.

The studies featured in this episode weren’t funded by CPARF, but they represent other interesting, innovative work that scientists are doing in the CP research space.

Links to the abstracts of the studies featured in this episode:

https://pubmed.ncbi.nlm.nih.gov/38608553/

https://pubmed.ncbi.nlm.nih.gov/38632183/

https://pubmed.ncbi.nlm.nih.gov/39325331/

The majority of people living with cerebral palsy (CP) today are adults, and more research is finally being done to better understand the unique healthcare risks and needs of adults with CP. However, many gaps remain in both research and healthcare for adults with CP. Dr. Cristina Sarmiento is a clinician and researcher who focuses on the transition from pediatric to adult healthcare for adults with lifelong disabilities, particularly CP, with the ultimate goal of promoting overall health, well-being, and quality of life across the lifespan.

She is part of a team of researchers investigating research priorities for adults with CP. In this episode, Cristina discusses a CPARF-funded research project she and the team are working on through a strategic partnership with the CP Research Network. This project is critical for ensuring that future research will address the needs of the CP community. Cristina is an Assistant Professor in the Department of Physical Medicine & Rehabilitation at the University of Colorado Anschutz Medical Campus.

About 18 million people worldwide have cerebral palsy (CP). CP’s impacts span a person’s whole lifetime and will likely change with age. Thankfully, more recent research has been aimed at better understanding important issues related to managing CP throughout adulthood. This Research Roundup with Dr. Marie McNeely features three new research papers in this area.

They examine important factors for people with more involved CP to consider when transitioning from assisted to independent living, functional decline in adults with CP living in the community, and dealing with and managing falls. Jocelyn Cohen, CPARF’s Vice President of Education also joined the conversation to share why these new studies matter for people with CP.

The studies featured in this episode weren’t funded by CPARF, but they represent other interesting, innovative work that scientists are doing in the CP research space.

Links to the abstracts of the studies featured in this episode:

https://pubmed.ncbi.nlm.nih.gov/38591970/

https://pubmed.ncbi.nlm.nih.gov/38433033/

https://pubmed.ncbi.nlm.nih.gov/38994847/

Technology can make it easier for people with disabilities to access and engage with their communities, and We Hear You is dedicated to building a world with diversity and inclusion as the foundation of innovation. In this episode, you’ll hear from Pierre Paul and Ashley Schreck. Pierre is Founder and CEO of We Hear You, a startup company in our 2024 Remarkable US Accelerator Program.

Pierre shares the story of how the company began, the sign-language interpreter that got them started in disability tech, and their latest products, which focus on increasing accessibility by making it easier for people with disabilities to open doors and enter spaces. The Hero Door Opener can make virtually any door open automatically, and the Push Fob puts the power of opening automatic doors in your hands. This means you can say goodbye to struggling with wall-mounted push plates for automatic doors.

Ashley joins us for the second half of the episode to talk about her experiences using products from We Hear You. As the Director of Marketing at EP!C, Ashley and her team partnered with We Hear You to test their products and provide feedback.

Tremendous progress has been made in the development of technology and other innovations to support people with disabilities and make the world more accessible, but we still have a long way to go. The Paralympic Games have been a key driver of innovation and are changing the way that people perceive disabilities and assistive technologies. In this episode, you’ll hear from Paralympic athlete Jeff Butler, a member of the USA Wheelchair Rugby Team and a three-time Paralympian. Jeff and his teammates took home the silver medal in the 2016 Games in Rio de Janeiro, the 2020 Games in Tokyo, and the 2024 Games in Paris. He shares his story and gives us a behind-the-scenes look at accessibility and assistive technology from his experiences during the recent 2024 Paralympic Games, including mobility aids, adaptive clothing, and more.