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.
Do you or your child have movements that are difficult to control? Is your mobility and function impacted by abnormal movements or do these movements cause pain? If so, you or your child may have Dyskinesia. If you want to learn more, including how it is treated, don't miss this educational Town Hall with experts Dr. Heather Riordan, from Kennedy Krieger Institute, and Dr. Michael Kruer, from Phoenix Children's.
CPF Executive Director Rachel Byrne and Dr. Heather Riordan, Director of the Phelps Center for Cerebral Palsy at the Kennedy Krieger Institute discuss dyskinesia.
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.
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 Dyskinetic Cerebral Palsy Functional Impact Scale is a new tool useful measuring the functional impact of dyskinesia on children's movements and postures and the perceived impact of dyskinesia on daily activities. It can can help identify priorities for intervention.
This systematic review looks at all available evidence for pharmacological/neurosurgical interventions for managing dystonia in individuals with cerebral palsy to inform the AACPDM care pathway.
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!
Hypotonic CP, also known as hypotonia, is a form of cerebral palsy that causes low muscle tone. In other words, the muscles are overly relaxed and your child may feel floppy.
Mixed types of CP refer to symptoms that don’t correspond to any single type of CP but are a mix of types. For example, a child with mixed CP may have some muscles that are too tight and others that are too relaxed.
Ataxia affects balance and depth perception. Children with ataxia will often have poor coordination and walk unsteadily with a wide-based gait.
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.
Dyskinesia is an umbrella term encompassing a range of different movements. These are all movements that can be out of your control. Dyskinesia is very common in cerebral palsy.
Dr. Bhooma Aravamuthan presents Understanding Dystonia: Diagnosis and Treatment at the 2020 AACPDM Community Forum. Moderated by Council Chair, Jen Lyman.
The Dystonia Care Pathway was created in 2016 based on best available evidence and is currently under revision. This link will be updated accordingly. The goal of the these Care Pathways is to help Health Care Professionals understand the research evidence on the topic so that they can make clinical decisions for the care of the individual.
Spastic cerebral palsy is the most common type of CP. People will experience increased muscle tone and their movements may appear stiff or awkward.
People who have dyskinetic cerebral palsy experience involuntary movements that are difficult to control. These movements can be slow, twisting and writhing, or rapid and jerky, and can impact movement in the hands, arms, feet, legs and even the face or tongue.
Do you or your child have movements that are difficult to control? Is your mobility and function impacted by abnormal movements and cause pain? If so, you or your child may have Dyskinesia. If you want to learn more, including how it is treated, please join us on for a new educational Town Hall with experts Dr. Susan Biffl, from Rady Children's Hospital, and Dr. Mark Gormley, from Gillette Children's.
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.
CPF Executive Director Rachel Byrne and speech therapist, Kristen Allison, PhD, CCC-SLP discuss communication and Cerebral Palsy.
Drooling is an important problem for many individuals with CP and there are a number of interventions available to treat symptoms. If an individual with CP or their caregiver have concerns about drooling it is important to discuss with a health care provider. Care pathways such as the AACPDM pathway can be a starting point for shared decision making. In all cases, working together as a team is important in choosing the best alternative. Children and adults with CP may have trouble with drooling, or saliva management. In the medical world, drooling is referred to as sialorrhea. Saliva plays an important role in eating but also can interfere with airway clearance and breathing, as well as social participation. When drooling has this kind of impact it becomes important to consider intervention.