This compelling podcast and article tell the story of one doctor who strives to improve the lives of those living with intellectual and physical disabilities despite many hurdles.
United Spinal Association has developed a comprehensive air travel guide for wheelchair users or anyone with mobility issues to assist with everything from traveling with your wheelchair to what to do if things break.
The Accessible Stall is a disability podcast hosted by Kyle Khachadurian and Emily Ladau that keeps it real about issues within the disability community. Because we each have different disabilities and mobility levels, we approach everything we talk about with two unique viewpoints, offering our listeners a fresh insight into how differences in disability can color your experiences and perspectives. And we never shy away from offering our honest opinion. Even if they go against the grain of the disability community at large, we always speak our minds.
This presentation from the 2023 AACPDM Community Forum presents a model for creating a smooth transition from pediatric care to adult care for teens and young adults with cerebral palsy.
In 10% to 15% of cases, there is no clear cause of CP. There is increasing recognition that genetics plays a part, but no standardized approach to genetic testing in patients with CP exists. In this study we asked the question whether both people with and without known risk factors for CP should have genetic testing.
This study highlights the importance of monitoring and managing chronic conditions in adults with cerebral palsy. It also provides important information that can help healthcare professionals better understand the health needs of this population.
Welcome to the second part of my travel series! In the previous post, I wrote about how I found my love for traveling through my trip to Madrid and Paris. Looking back, not only do I realize that these trips took place during very different phases of my adult life, but they also mark the different phases of my CP in recent years. Although CP is the result of a non-progressive brain injury, many folks experience a decline in their physical abilities in their adult years — the inevitable effect of aging, not just for those with disabilities, but for everyone.
In the next couple of blog posts, I’ll write about some of my favorite trips that I took over the years. I’ll travel down memory lane of all the new places I explored in recent years and eagerly wait until my next trip.
My cousin, Reeva, had recently moved to Kyoto, Japan to learn Japanese for a year, and she convinced me to visit her there. I didn’t know anyone else living in Japan and Reeva was going to be there short term, so I couldn’t possibly pass up going! I was admittedly pretty nervous about traveling all the way across the world— a 24-hour long plane trip, including a layover— especially to a country that uses a language that isn’t remotely like anything I was used to. But, again, I wasn’t going to miss this once-in-a-lifetime opportunity.
CPF Executive Director Rachel Byrne and Jason Benetti talk about his hard work, misperceptions, resilience, and his experience with cerebral palsy.
CPF Executive Director Rachel Byrne and Xian Horn, author and disability advocate discuss breaking down stereotypes.
Adults with Cerebral Palsy have unique care needs related to physiological changes that occurred with growth and development with Cerebral Palsy, including mental health, yet experience many barriers to proper care.
Growing up with Cerebral Palsy I often wondered if I would ever experience my happily ever after. The fairytales my mom read me always followed the life of a beautiful princess falling in love with a handsome prince. You never read about a prince and princess in wheelchairs or with any type of disability for that matter.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
The Cerebral Palsy Foundation has created a checklist to help guide you in living the healthiest life possible. This checklist has been created for adults with cerebral palsy to provide basic guidance surrounding routine and additional screenings that should occur as part of your primary and preventive care.
Though the initial insult or injury to the brain that causes cerebral palsy is non-progressive, aging with cerebral palsy and lack of physical activity during critical periods of development can impact biologic and metabolic function for adults with cerebral palsy.
Our educational series continues with this virtual event featuring a multi-disciplinary panel discussion on spasticity management and related issues for adults with Cerebral Palsy!
Cohort-based whole exome and whole genome sequencing and copy number variant (CNV) studies have identified genetic etiologies for a sizable proportion of patients with cerebral palsy (CP). These findings indicate that genetic mutations collectively comprise an important cause of CP.
CPF Executive Director Rachel Byrne and Lily Collison with Kara Buckley and individuals from the book Pure Grit, talk about what it takes to be successful with a disability.
CPF Executive Director Rachel Byrne and Peter Trojic, professional dancer with the Heidi Latski dance Company in New York City, discuss dance and disability.
The hardest part of raising two children with Cerebral Palsy is the fact that we live in a world that refuses to adapt to anything beyond ordinary. And I have always -- always -- known that Benjamin and Mason were far beyond ordinary.
Mental health care should be included at the outset, as part of discussions around physical, occupational, and speech therapies. I’ve seen studies on cerebral palsy’s effect on caregiver mental health — and that is important. Caregivers are part of the cerebral palsy community, too. It’s an interdependent one. There’s not enough about the nuance around how having cerebral palsy affects mental health.”
Don't miss Part 2 of this very special podcast series when podcast host Cynthia Frisina dives deeper with Michael Kutcher into his life growing up with cerebral palsy, his "coming of age" as the twin brother of actor Christopher "Ashton" Kutcher, and what Michael is doing now with his new "diffability" concept and continued advocacy work on behalf of people with disabilities and organ transplants recently featured in Forbes Magazine https://www.forbes.com/sites/karlmoore/2021/07/08/michael-kutcher-on-turning-obstacles-into-opportunities/?sh=6ed0e70f722f
Can there be a genetic cause of Cerebral Palsy in some cases? Let's Talk CP host, Cynthia Frisina talks with Dr. Michael Kruer about this topic and his ground-breaking research in Part 2 of a two-part discussion about the possible genetic causes of CP. When Michael Kruer was in medical school, he knew he wanted to work with children. With advancements in gene therapy opening up incredible opportunities in neuroscience, he realized he could be a part of something much bigger than himself and give children affected by movement disorders like cerebral palsy hope that didn’t seem possible just a few years ago.
Dating can be scary, all of the questions that go through your head before a first date can often be overwhelming. What do I wear? What do we talk about? Does my breath stink? These are common concerns before any normal date. My brain was wrapping itself around the idea that this was my FIRST DATE EVER.
