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.
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.
People with disabilities represent more than 27% of the United States adult population, making them the single largest minority group in the country. This new NIH designation, new research program and update to NIH mission are actions to ensure inclusion of people with disabilities.
The 2023 Health Summit will share new pathways for translating knowledge into practice for the Implementation of early detection and intervention for cerebral palsy from the best researchers and clinicians in the field.
Speech impairments like dysarthria are common in children with cerebral palsy (CP) which can greatly affect participation across environments. Our study examined how speech impairment severity changes over time in 101 children with CP at 4, 6, 8, and 10 years of age.
When a person is looking for a way to communicate in alternative ways, they need to find something that really works for them. They need to try to find a voice that sounds natural. They want to try to find a way to be efficient. They want to be able to communicate as normally as possible, even though they're not using their biological voice.
The bipartisan, Cerebral Palsy Research Act, is introduced by Congressman Steve Cohen of Tennessee. Read more here:
The 2023 Appropriations Act has passed and thanks to advocacy by the cerebral palsy community, it includes the strongest language and funding yet for cerebral palsy!
Dysarthria is a motor speech disorder that affects how clear and understandable a person’s speech is. Between 50-90% of people with CP have dysarthria.
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.
On Thursday, March 24th, 2022, the Cerebral Palsy Foundation hosted the first ever Cerebral Palsy Congressional Briefing with a panel of physicians, patient and self advocates.
March is National Cerebral Palsy Month in the United States and is an opportunity to highlight the history of cerebral palsy advocacy - where we’ve been, where we are currently, and the opportunities that are ahead.
Now you can receive a no-cost genetic test for you or your child sent directly to your home.
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 speech therapist, Kristen Allison, PhD, CCC-SLP discuss communication and Cerebral Palsy.
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.
If you're interested in learning more about what is involved with genetic testing and how a visit with a genetic counselor might be helpful, join Cynthia Frisina, the host of Let's Talk CP, as she dives deep with licensed genetic counselor, Danielle Lemke and they talk about what genetic counseling really is, how it can help and what it might be used for as it relates to potential genetic causes of cerebral palsy.
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 1 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.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
An international study recently published in the journal Nature Genetics has provided the first firm evidence that for a substantial number of people, their cerebral palsy (CP) may be caused by a genetic mutation, or mis-spelling in the body’s DNA blueprint.
"In addition to commonly associated environmental factors, genomic factors may cause cerebral palsy. We performed whole-exome sequencing of 250 parent–offspring trios, and observed enrichment of damaging de novo mutations in cerebral palsy cases."