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.
Cynthia Frisina discusses the purpose and importance of Cerebral Palsy Awareness Month and Day to bring people together to advocate for better healthcare, research advancements, funding and more those with CP and their families.
Our research shows that higher Bone Mineral Density (BMD) was associated with a greater risk of fracture, which is opposite of what we would expect. When we picked apart the BMD ratio we found that bone size had the strongest association with fracture risk, such that smaller bones had a greater risk.
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 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!
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.
Good nutrition is critical for your child's healthy brain development. It's not uncommon for families to struggle getting enough food to eat. If you feel like you haven't had enough food to feed your whole family in the last month, please talk to someone. This is a common problem.
My boys were exactly the same amazing, lovable, adorable, brilliant little boys after the diagnosis, that they had been before it. The exact same.
Oropharyngeal dysphagia, or OPD, is an impairment of the oral or pharyngeal phases of the swallow. This can impair muscle movements and coordination of the mouth, such as the lips, tongue, jaw, cheeks, palate, and also muscles of the pharynx and the entry to the airway.
The typical cognitive assessments that are used for children require them to be able to use their hands to point to pictures or hold puzzle pieces.
Weight, height and body composition are important indicators for development. The tools used to measure these can be different for children with cerebral palsy.
Children with cerebral palsy (CP) often grow poorly and assessment of growth in this population is further complicated by two main difficulties. Firstly, children may have joint contractures, muscular weakness, scoliosis, and/or involuntary movements that make standing or lying straight difficult, if not impossible.
When we have a physical disability, our bones can get a bit weak or osteoporotic. Something that can be improved is promoting bone health for people with cerebral palsy.
"Cerebral palsy is primarily a motor impairment so it's really important to look at what the child’s motor function is. Are they developing on the trajectory of a child who has cerebral palsy or are they developing as we would expect a baby to develop? "
Receiving early diagnoses or high‐risk for CP classification is a parent priority. Alignment between parents and providers exists for International Classification of Function domains of body functions/structures and activity, but less for those of environment, personal, and participation.
My name is Nathalie Maitre, I work at Nationwide Children's Hospital. I'm a physician and a researcher
Owen is our third baby and after a healthy pregnancy and making it to 38 weeks, I thought we would coast into life with three kids and adapt to the beautiful chaos that is life outnumbered by little ones. Somewhere in between, I ended up watching as my newborn baby was packed up into a life-flight helicopter and whisked away before I even got a chance to hold him. I would do whatever it took to get to Owen at Nationwide Children’s Hospital, I would will him from hundreds of miles away to hang on, to fight long enough for me to get there – and then we could do “whatever it took” together.
Children with cerebral palsy experience brain damage around birth or before birth. So the language of the brain in other words, the way they will move, will be different from typical movements. So by looking at their movements, we will understand that there is something that is wrong in the brain.
Diagnosing cerebral palsy (CP) at an early age is important for the long-term outcome of children and their families.
Early diagnosis of cerebral palsy (CP) is critical in obtaining evidence-based interventions when plasticity is greatest.
Early diagnosis begins with a medical history and involves using neuroimaging, standardized neurological, and standardized motor assessments that indicate congruent abnormal findings indicative of cerebral palsy. Clinicians should understand the importance of prompt referral to diagnostic-specific early intervention to optimize infant motor and cognitive plasticity, prevent secondary complications, and enhance caregiver well-being.
As a physician and researcher, I skeptically looked forward to learning more about mindfulness practice, because there is evidence it helps with stress management, self-regulation, focus, productivity and happiness. As a mom, I felt that weird mix of guilt that I was going to focus on “not-my-children” for a whole day, excited anticipation and anxiety that maybe I would be a complete failure at this. It turns out all the mental baggage I took into the workshop was the exact opposite of what mindfulness tries to achieve. The daily practice has since changed my life.
What we learned from our defensive lifestyle is that it’s normal to feel this way. It is a lot of information to process all at once and it’s an emotional rollercoaster immediately following a CP diagnosis. We realized that our diagnosis wasn’t what defined our child. She is an amazing little girl who is full of personality, she isn’t a fragile flower that needs to be sheltered, and by realizing this we were able to go on the offensive, and attack the challenges head on.
