S3, 23 - Research Roundup: Shining A Light on Vision Problems in People With Cerebral Palsy
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/
--------
12:45
--------
12:45
S3, 22 - Research Roundup: Expanding Our Understanding of Physical Activity in Individuals With CP
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/
--------
9:24
--------
9:24
S3, 21 - Feel the Rush of Action-Packed Parasports with the Game Phenoms from Big Karma
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.
--------
55:37
--------
55:37
S3, 20 - Research Roundup: Postural Differences May Impact Pain and Other Aspects of CP
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/
--------
9:10
--------
9:10
S3, 19 - Understanding the Healthcare Needs and Research Priorities of Adults with CP with Cristina Sarmiento, MD
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.
Sobre Changing What's Possible: The Disability Innovation Podcast
This podcast introduces you to cutting-edge science, technology, and innovation that make real-life impacts on people with disabilities. Companies and individuals around the world are creating new products and improving the accessibility and affordability of technology to facilitate mobility, communication, and participation in everyday life.
As part of its focus on technology and innovation, Cerebral Palsy Alliance Research Foundation (CPARF) runs the Remarkable US program — part of the global Remarkable program founded and run by Australia's Cerebral Palsy Alliance. Through its work, CPARF supports the development of new assistive devices and accessible technology to improve the lives of people with cerebral palsy and other disabilities.
During our seasons, you’ll hear from entrepreneurs and experts who help bring life-changing products to the market, people with disabilities who share their valuable perspectives and lived experience using these innovations each day, and additional prominent voices in the disability community.
Listen and subscribe to learn more about how you or someone you care about can benefit from today’s latest advances in disability tech.
Brasil