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.

The vast majority of people with cerebral palsy (CP) experience chronic pain throughout their life. Even though this pain is incredibly common, it’s often not adequately treated or managed in regular clinical care. Pain treatment delays can lead to more severe pain or other health problems later on. To improve how clinicians treat pain, it’s essential for them to regularly screen patients for pain, classify what type(s) of pain someone has, and measure changes in pain over time.

In this episode, Dr. Amy Bailes and Dr. Mary Gannotti discuss their ongoing CPARF-funded research focused on improving the quality of care for adults with cerebral palsy who experience pain. Amy is a physical therapist and Associate Professor in the Department of Allied Health at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati. She is also Director of Quality improvement with the Cerebral Palsy Research Network. Mary is a physical therapist and Professor at the University of Hartford and performs clinical research with the Cerebral Palsy Research Network. She is also co-chair of the CP Research Network’s Adult Study Group.

For years, surgeries and medications have been used to manage different symptoms that people with cerebral palsy (CP) experience. As new surgical approaches are developed, new medications become available, and new data are collected on the effects of these treatments, clinical care continues to evolve. Hosted by Dr. Marie McNeely, this Research Roundup covers three recently published papers that share updates on surgical interventions and medications for managing symptoms of CP. The papers examined how hamstring lengthening surgery may impact pelvic tilt during walking in adults with CP, trends in the timing of hip surgery for children with CP, and updated clinical recommendations for treating dystonia in individuals who have CP. Jocelyn Cohen, CPARF’s Vice President of Education, also discussed why this new research matters for people with CP. The research included in this episode wasn’t funded by CPARF, but the papers describe 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/38935848/

https://pubmed.ncbi.nlm.nih.gov/38572177/

https://pubmed.ncbi.nlm.nih.gov/38640091/

Finding accessible housing or making your current home more accessible can be difficult, and navigating the process of getting permits and renovating to improve accessibility can be complicated and expensive. Sudden needs for accessible housing are a particular problem for many people with spinal cord injury, progressive diseases like multiple sclerosis (MS), or other conditions that impact mobility. In this episode, you’ll hear from Julie Lineberger, Co-Founder of WheelPad L3C, one of the startup companies in Cerebral Palsy Alliance Research Foundation’s 2024 Remarkable US Accelerator Program. WheelPad works with customers to provide modular, accessible housing solutions for short-term or long-term use.

Julie shares why they started the company, describes their current SuitePAD and upcoming products, and gives examples of how their products are helping people with disabilities stay at home with their families in their communities. Our second guest, Nora McCabe, talks about her experiences using a SuitePAD that her parents attached to their home after her spinal cord injury, and she explains how this accessible bedroom and bathroom addition has made a huge difference for their family.

Living an active lifestyle has wide-ranging benefits, including better mental and physical health. However, people with physical disabilities experience unique obstacles, and it can be difficult to decide which adaptive activities are right for you. The Kelly Brush Foundation is dedicated to inspiring and empowering people with spinal cord injuries to lead active and engaged lives. Through the Active Project, they provide relevant resources for people with many different disabilities, not just spinal cord injuries.

Edie Perkins, Executive Director of the Kelly Brush Foundation, joined host Molly Lazarus in this episode to talk more about how the Active Project is helping people with disabilities learn more about adaptive sports, discover local sport organizations and events, and connect with other disability community members who are interested in becoming more active or who already consider themselves active.