The Cerebral Palsy Research Network (CPRN) is a group of doctors, therapists and patient advocates collaborating to improve treatments and outcomes for people with cerebral palsy (CP). The network combines the expertise of doctors and therapists committed to treating CP with clinical epidemiologists and rigorous data collection practices to plan and execute high quality clinical trials and quality improvement protocols.
The mission of the Cerebral Palsy Research Network (CPRN) is to improve outcomes that people with cerebral palsy value most through high quality clinical research and quality initiatives.
As March kicks off Cerebral Palsy(CP) Awareness month and culminates in National CP Awareness Day on March 25, it gives us a great opportunity to strengthen our community and inform the general public about CP.
Here are some ways you can support our work and the CP community:
1) Wear Green! Our community color is green so let’s make our presence known wherever we can! If you missed your chance to order last week, you can still get our shirt and support our common cause!
2) Be sure to log on to Instagram and follow us at cp_research_network. Tune in for our “Take Over Tuesdays” as CP advocates take over our account with their own unique content. Get people talking about CP using the hashtags #gogreenforcp, #researchcp, #cerebralpalsy, #cprnresearch
3) Help us spread the word about our MyCP webinar series and save the date for Dr. Michael Kruer’s upcoming webinar on March 10 at 8 pm ET. This must-see webinar will outline the impending launch of Dr Kruer’s “Genetic Causes of Cerebral Palsy” study. Follow us on YouTube to get access to all of our MyCP webinars.
4) Share our Facebook posts and blogs about #CPStories. Every month, we feature the stories of people in our community who are making a difference in CP research. Want to share your own story? Tell us about your experiences for future publication on the CP Research Network blog and social media!
5) Make a direct donation to support our mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming. Your generosity helps our community thrive.
We all have unique experiences of what CP is, what it is like living with it, and the belief that outcomes can be changed for the better through research. Let’s get out there and shout about our wonderful community!
Most people living with cerebral palsy today are adults, yet there is a disconnect about how childhood neurological care should transition into adulthood. Today, Dr. Bhooma Aravamuthan, MD, DPhil, shares her efforts to bridge that gap…
As a pediatric neurologist, the bulk of my practice is caring for children with cerebral palsy, yet I did not receive training in the unique needs and concerns of adults with the condition.
As my patients make the often-difficult transition away from pediatric care to adult care, what medical symptoms and red flags do I tell them to watch out for? How can I help them advocate for their medical needs? How do I convince my adult neurologist colleagues that CP is not just something that happens to kids? These kids become adults, and they still need us.
Last year, I was elected as Vice-Chair of the American Academy of Neurology (AAN) Adults with Intellectual and Developmental Disabilities Section. My election was bolstered after I sounded the alarm that neurologists who care for adults should increase their focus on patients with CP. I am not alone in my passion for this topic, and there is a growing consensus that we need more expertise.
As I investigated this issue, I turned to the Cerebral Palsy Research Network and engaged with The Adults with Cerebral Palsy Workgroup within the network.
The workgroup features clinicians across specialties (including physiatry, physical therapy, developmental pediatrics, and orthopedics) who have long worked to increase awareness of the many changing needs faced by adults with CP.
I came to them asking, “Where do I start?” Together, we established what we knew, what we thought we knew, and what we needed to learn more about regarding the neurologic care of adults with CP. Along with a talented MD-PhD student at my home institution, Washington University School of Medicine, we conducted a comprehensive systematic review of the available literature on neurologic concerns faced by adults with CP.
The results were informative but also sobering. Adults with CP have twice the risk of stroke and eight times the risk of myelopathy (spinal cord compression and injury) than adults without CP. A third of adults with CP lose mobility as they age, and the majority suffer from increasing pain and fatigue. These are all concerns that require neurologic surveillance, which, by and large, is not occurring. We also established how much we still need to learn about the neurologic problems faced by adults with CP. As you may have guessed, there is still a lot we do not know.
In the article, we include recommendations for clinicians, researchers, and adults with CP about the kinds of neurologic symptoms to look for and what symptoms we need to learn more about.
We believe that resources of this type are an essential step toward ensuring adult medical practitioners are more aware of the issues facing adults with CP. Our findings highlight the critical need for ongoing neurologic surveillance of adults with CP.
At the least, we hope that including specific recommendations for adults with CP will empower patients to self-advocate until we, as clinicians, can bridge the wider knowledge gap we have regarding their care.
As word spreads of our recommendations, we have been encouraged by the positive feedback but are eagerly awaiting to see if this changes practice as well. While we are hopeful, we are not naïve. We will keep sounding the alarm until ongoing neurologic surveillance of adults with CP is the norm.
[If you want to participate in our adult study of personal wellbeing, please join MyCP!]
About Dr Bhooma Aravamuthan
Dr. Aravamuthan is an Assistant Professor of Neurology and pediatric movement disorders specialist in the Cerebral Palsy Center at the Washington University School of Medicine in St. Louis.
Hudson Birkin was diagnosed with cerebral palsy at the age of four. Today his mother, Suzanne, 51, talks about her fight to advocate for the care her son needs…
When it comes to raising her eight-year-old son with cerebral palsy, devoted mother, Suzanne Birkin finds it best to take one day at a time.
“It’s hard to think way into the future for Hudson,” says Suzanne, who lives with her son and husband, Carl, in Coventry in the United Kingdom. “We primarily concentrate on challenges as they arise and make sure he is happy and feels like a valued member of his community.”
The little boy who loves to draw and build blocks was first diagnosed in 2016 when he was four-years-old after his parents noticed he was not reaching developmental milestones as a baby and toddler.
In addition to CP Hudson also has a speech disorder. Since his diagnosis, he has undergone physical therapy, occupational therapy, speech therapy, and neurology consultations, all through the UK’s free National Health Service (NHS). This care has helped Hudson progress to taking independent steps while wearing splints and using a walker, but his family is unsure whether the NHS can adequately support his long-term needs.
“We are lucky to get our medical needs covered by the NHS, but the help is limited,” explains Suzanne. “When Hudson got to the point where he was walking independently, his therapy was scaled back to once a year to review his progress. It’s frustrating. It feels like the NHS gets you to the bare minimum, and then they let you go. Hudson can only walk about 20 steps on his own! I’ve learned that you have to shout and complain to get more from the NHS. It works sometimes, but other times they just can’t provide.”
Determined for their son to reach his full potential, Suzanne and Carl pay for their son to have private physical therapy consultations twice a year and private music therapy classes that help with his speech.
Five days a week, Hudson attends Sherbourne Fields School, an all-age school for students with a broad spectrum of needs, including physical disabilities, medical conditions, and learning needs. The school facilities include a swimming pool, multi-sensory room, soft play area, and a strength and conditioning gym.
“It is a fantastic school,” Suzanne says. “Hudson loves the routine and enjoys the social aspect of being with his classmates.”
Suzanne, a dance teacher with three grown-up step-children in addition to Hudson, relies on family and friends and self-care to get through the challenging moments.
“Yoga and concentrating on my breathing help me,” she says. “Escaping in my work helps too, and I have very supportive friends. I have a group of mommy friends whose children all have special needs. They just get it and understand the ups and downs.”
As she supports Hudson through his CP challenges, Suzanne is thankful to be part of the CP Research Network and the opportunity to participate in research to help advance knowledge of Hudson’s condition. The family has already contributed to a speech research project via the network.
“It was gratifying to see multiple-choice questions that reflected Hudson’s development,” she says of the experience. “Usually, I have to tick “other” because an appropriate answer isn’t on there. I felt validated and listened to. I’m happy to participate in anything that can bring more awareness to CP.”
Right now, she is enjoying seeing Hudson grow and find his way.
“Hudson is a quiet boy when you first meet him but opens up the more comfortable he gets,” she smiles. “He is interested in geography and loves to go on Google maps and look up his neighborhood and where his grandparents live in the U.S. He can navigate very well from Philadelphia, to where we live, to where his aunt lives in the south of England. He’s good at getting around! He is still working out what he wants to be when he grows up and sometimes says he wants to be a dance teacher like his mom or help people like his dad, who cares for adults with learning disabilities. I hope he has every opportunity to pursue any dream he wants to.”