Resources for children with cerebral palsy and their families, such as research and educational presentations regarding therapies, care, and a free cerebral palsy toolkit you can download!

Three headshots of Cerebral Palsy researchers Aravamuthan, Kruer and Gross

CPRN Investigators To Speak at NIH Cerebral Palsy Workshop

The banner for the NIH meeting on the state of cerebral palsy research with a graphic of a brainThe National Institutes of Health (NIH) are hosting a virtual public workshop on the state of cerebral palsy (CP) research starting next Wednesday, August 17 and August 18 that features three investigators from the CP Research Network. The meeting has been organized in response to Congressional requests to provide an update on the NIH Strategic Plan for Cerebral Palsy which was published in 2017 following two CP workshops held in 2014 and 2016. The organizers describe the purpose of the meeting as “to provide a forum for researchers, clinicians, and people with or affected by cerebral palsy to share updates on research progress and new opportunities since the publication of the Strategic Plan.” The CP Research Network encourages interested members of our community to register and join the online meeting.

The meeting is organized to follow the three priorities of the strategic plan starting with basic and translational research, and then clinical research and ending with workforce development. Drs Aravamuthan and Kruer, funded by NIH for their work in CP, will provide updates on their research progress on Day 1. Both are movement disorders neurologists with Dr. Aravamuthan specializing in dystonia in CP and Dr. Kruer on the genetic causes of CP. CP Research Network Chief Executive, Paul Gross, will speak on the use of CP Registries in research on Day 2. Each day will include between 40 and 80 minutes of discussion moderated by NIH staff. This meeting will include discussions of research progress and needs across the lifespan from neonatal development to adults with CP.

CP Stories: Duncan Wyeth shown in a grey jacket with silver hair introducing Sheryl Hine.

CP Stories: For Paralympian Duncan Wyeth, It All Began with a Red Schwinn

A young Duncan Wyeth with curly hair, a dark blue suit and red tie speaking into a microphone.

Duncan on the Paralympic Committee and as an executive at United Cerebral Palsy.

If you subscribe to the idea that the baby boomer generation officially started in 1946, then Duncan Wyeth was truly one of the first—he was born in March of that year, just thirteen months after his father had come home from World War II, wounded during the Battle of Anzio. At a hefty 10 pounds 6 ounces, Duncan was by no means a preemie, as is common for people with cerebral palsy (CP(. But the birth itself was complicated, and the labor lasted for thirty-six hours. “It’s not surprising that I experienced a lack of oxygen,” Duncan joked, as we spoke over Zoom.

And so when baby Duncan started falling behind on common developmental milestones, this, too, was unsurprising. A few months after Duncan’s first birthday, his parents, Barbara and Irving, took him to a clinic in Detroit, roughly 100 miles from where they were living in Lansing, Michigan, where Duncan’s father was attending Michigan State on the G.I. Bill.

In addition to a formal diagnosis of CP, Irving and Barbara also received a sobering prognosis: they were told that he would never walk, would have an intellectual disability, and would probably be dead by forty. The doctors, in short, told them to place Duncan in an institution and go have another baby. “In 1947, that was not a cruel, uneducated prognosis,” Duncan said. While Duncan’s parents quickly came to terms with the diagnosis, they were, to their credit, skeptical of the prognosis the doctors had offered. This skepticism was arguably the first of several major decisions Barbara and Irving made well. In the words of Duncan: “I’ve always said that the most important lesson in life is ‘choose your parents well,’ and I had the foresight to do that.”

Cerebral Palsy was still poorly understood at the time—United Cerebral Palsy wouldn’t be founded until a couple years later, in 1949—but as Duncan neared school age, his parents were proactive in getting him the physical therapy and the pre-K social skills he needed. They also, crucially, allowed Duncan to be a kid, to take risks. “My parents not only allowed me to go outside my comfort zone, they encouraged it,” he said.

In kindergarten, they made another major decision that would pay dividends: they bought him a bicycle. At first, the bike served a pragmatic function. “I would never have been able to keep up with my playmates, go to the local playground, etc. if I hadn’t been given that bike. It really provided me with the mobility to get around.” Duncan needed training wheels, but he was unconcerned. The bike was, in his words, the “great equalizer.”

In second grade, though, Duncan received an upgrade: a beautiful bright red Schwinn with a small, battery-operated horn. That summer, he made sure the bike was well-loved: “I rode that thing constantly, everywhere. Whether I needed to or not.” At the time, summer was something of a double-edged sword for children with CP. It meant freedom, yes, but most children received their physical therapy primarily through the public school system which, of course, was on break in the summer. If a child wasn’t receiving private physical therapy, then summer usually meant a step backward. Some of the progress made during the school year would inevitably be lost.

But when Duncan returned to school in the fall of third grade, his doctor was confused. “Duncan isn’t up on his toes as much when he’s walking,” the doctor said to Duncan’s mother. “You’ve found some way for him to have physical therapy in the summer, I’m guessing?”

“Well, no, I wonder what’s different,” said Barbara. “This spring he got a new bicycle, but that’s the only thing I can think of.”

Unlike most children with CP, Duncan’s condition had actually improved over the summer—he was notably less spastic, ostensibly because of all the exercise he had been getting on his bike. This Schwinn would mark the beginning of a lifelong love: “The cycling was physical therapy, but it wasn’t physical therapy that required a licensed therapist or insurance coverage. And I liked it. I was doing something.”

Duncan’s parents gave him the Schwinn for the same reason any parent would do so, but it’s hard to overestimate how radical the decision was at the time. Measured, supervised physical therapy was slowly becoming a part of any CP regimen, but common exercise—working up a sweat while riding a bike up the nearby hill, say—was thought to be harmful to the overall health of a person with CP. “Exercise was contraindicated, because the belief was the stress would exacerbate my spasticity,” Duncan explained. In this regard, Duncan’s parents were almost a half-century ahead of the research.

Duncan Wyeth sits on a sand beach facing lake Superior in a blue USA jacket with his bicycle.

From second grade on, cycling has been a key part of Duncan’s life even at 76 years of age.

To say that cycling became a hobby for Duncan would be an understatement. He would continue to cycle in high school—roaming through the streets of Taipei, where he lived for two years while his dad taught at National Taiwan University—and then through his university years as well, first at Alma College and then at Michigan State, just like his father. In his twenties, Duncan joined a touring bike club, participating in weekly rides, including century rides. Not until his thirties did he begin to seriously compete in disability sports, receiving one gold medal and two silver medals in the National Cerebral Palsy games. A few years later, he would compete internationally—first at the international Cerebral Palsy Games, where he was the first American to receive a cycling medal. At the 1988 Paralympic Games in Seoul, he placed fifth out of more than forty competitors. This marked the beginning of his work with the Paralympics, which lasted several decades: in ‘92 in Barcelona he served as a cycling coach and member of the leadership team, and then at the Atlanta Paralympics in ’96 as the prestigious “chef de mission” for the U.S. Paralympics team.

During this time, he also served as the voting representative for athletes with disabilities on the United States Olympic Committee for two Olympic cycles of four years each. In ’97, he was elected to the International Paralympic Committee (IPC) and would later become the vice president. In 2000, the American Academy for Cerebral Palsy and Developmental Medicine established the Duncan Wyeth Award, which annually recognizes an individual who has made significant contributions to sport and recreation for persons with disabilities. While Duncan stopped competing around this time, he still cycles on a regular basis. “I am convinced that at age seventy-six, I am still as mobile and as active as I am in large part because of a physically active, sporting lifestyle.”

Duncan Wyeth in a bright red USA check and blue helmet sits in his recumbent trike smiling.

Duncan Wyeth has not only been the recipient of several awards and medals, he also has had an award named after him by the American Academy for Cerebral Palsy and Developmental Medicine.

Duncan is retired now, or as he likes to call it, “unemployed by choice.” But he has chosen to stay involved with the CP and disability community more broadly for many reasons. To understand one such reason, we need to briefly return to Duncan’s eighth-grade English class. His teacher, Mr. Porter, was a friendly, charismatic man who had become disabled after contracting polio as a child. “Mr. Porter was the first professional disabled adult I’d ever encountered, and therefore my first significant role model,” Duncan said. His teacher was proof that it was possible for a person with disabilities to have a fulfilling, ambitious professional life. For many young people with disabilities, they either never meet that adult role model or do so too late. Throughout his adult life, Duncan has taught and presented at schools with abled and disabled students alike in the hopes that he might serve as an example of what is possible. These exchanges need not be particularly complex: it is enough, in Duncan’s words, to enable a young disabled student to realize, “I can do that.”

He has also chosen to stay involved with organizations like United Cerebral Palsy (UCP) and the Cerebral Palsy Research Network (CPRN) to ensure that others have access to sorely needed resources and support systems. The types of resources that CPRN offers are largely in-step with the research, but Duncan particularly appreciates that they reflect what people with CP actually want. “One of the reasons I’ve been impressed by CPRN is their real desire to listen to the consumer voice and input so that programs and services are consumer-focused,” he said. To this end, Duncan also appreciates the close relationship between the community and its members: “There’s always research going on, all kinds of surveys that people with CP can participate in. They can contribute to a knowledge base that’s really going to move the needle.”

Duncan has done a fair amount of moving the needle himself, consistently pushing his limits and defying expectations. But he was resolute that his accomplishments wouldn’t have been possible without the support he’s received: empowering, passionate parents; the opportunity to pursue a college education; the chance to travel the world and represent his country; years of engagement in meaningful employment. “I am where I am today because of all the steppingstones I’ve had along the way,” he said. “The economic security, rich and varied learning opportunities, wise and caring mentors, and a personal commitment to progress. If I hadn’t acquired over the years the skillset needed to navigate an unfriendly system, there’s no way in hell I’d be who I am in 2022.”

MyCP Webinar: What is CPChecklist?

Unni G. Narayanan, MBBS, M.Sc., FRCS(C). A headshot of a broadly smiling man with short silver hair wearing a dark suit.

Dr. Unni Narayanan has created two leading outcome measures for children with ambulatory and non ambulatory cerebral palsy — the Gait Outcomes Assessment List (GOAL) and Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD).

Dr. Unni Narayanan, a pediatric orthopedic surgeon and outcomes researcher, will share his vision for helping parents manage the health outcomes for children with severe (non-ambulatory) CP which is called CPCHECKlist©. The webinar will take place on Monday, May 16 at 8 PM ET and parents, caregivers or clinicians should register in advance to receive an invitation. Dr. Narayanan is the creator of the CPCHILD which is the leading outcome measure for health-related quality of life for children with severe CP.

Cerebral Palsy Co-morbidities and a Health Tech Evaluation Checklist (CPCHECKlist©) is a new parent-reported list of specific health items and co-morbidities, commonly experienced by children with severe cerebral palsy (CP) and CP-like conditions. In addition to reporting the presence and perceived severity of each health issue, the parent/caregiver also indicates which of these they wish to have addressed at any given clinical encounter. The CPCHECKList includes a section on the use of health-technologies. The CPCHECKlist is intended to serve as a companion health module of the CPCHILD questionnaire or as a stand-alone health/comorbidity index to guide clinical decision-making or to quantify the health status of a child with severe CP in a standardized, comprehensive way for research and clinical management.

Please join us to learn about this important new tool which will help parents manage the care of their children. Dr. Narayanan will be available for live Q&A directly following this presentation. MyCP Webinar Series registrants will receive an email with login details and a recording will be posted within 24 hours.

A cartoon depicts people running and a man rolling quickly in a wheelchair to reach 60 miles for cerebral palsy

60 Mile Challenge for CP Research

A young girl in a brown knit hat takes steps in her walker.

Join us for the 60 Mile Challenge for CP

Join us this May in rallying support for the cerebral palsy (CP) community and our research work at the CP Research Network with the 60 Mile Challenge for CP Research! This peer-to-peer fundraiser is a great way to raise awareness for CP and provide a way for your friends and family to improve the lives of people with CP by raising money for our national research efforts. You can join the challenge on Facebook and raise money there or, if your are not active on Facebook, on our 60 Mile Challenge event website. And you can clock your miles any way you see fit – Fitbit, wheelchair odometer, Strava, phone app, whatever works for you and how you move! You can create a team, do it solo or just support someone else that is doing it. Share your progress on Facebook to get support for your efforts!

 

A young woman with cerebral palsy in a hat and shorts using arm crutches leans on a tree during a hike.

You can go solo or start a team or just support someone else who is doing the 60 Mile Challenge!

The 60 Mile Challenge for CP Research is the first in a series of peer-to-peer fundraising activities that we will conduct this year. Our goal is to raise funds to support our expanding research agenda to answer critical questions in the care of children and adults with CP. The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health and wellness outcomes that people with cerebral palsy value most.

Please join us this May for the 60 Mile Challenge for CP Research!

Headshot of Dr. Adam Ostendorf for his webinar on cerebral palsy and epilepsy

Update on Epilepsy and Cerebral Palsy

A headshot of Adam Ostendorf, M.D. A smiling man with short brown hair wearing a black suit and red tie.

Dr. Adam Ostendorf will present the CP Research Network findings about people with CP and epilepsy.

Our April MyCP webinar, next Tuesday, April 19, at 8 pm ET, will provide an overview of our initial findings about people with epilepsy and cerebral palsy (CP). The webinar will feature Adam Ostendorf, MD, a pediatric neurologist from Nationwide Children’s Hospital, who is the principal investigator of our epilepsy research within the network. Dr. Ostendorf has used the CPRN Registry and validated outcome measures, to learn more about the quality of life for people with CP and epilepsy.

Dr. Ostendorf was funded by the Pediatric Epilepsy Research Foundation in 2018 to add epilepsy specific support into the CPRN Registry. Since that time, Nationwide and other centers with the CP Research Network, have been gathering data about the experience of children with epilepsy and CP and examining differences in treatment and outcomes for kids with epilepsy and CP versus those without CP. Dr. Ostendorf will share his findings and how these can lead to important research to improve outcomes for children with epilepsy and CP. His findings have ramifications for children and adults alike.

If you are interested in joining the webinar, you can register on our MyCP Webinar Series page. People who have registered for our whole series will receive a link to the webinar in email a few days prior. If you cannot attend live, we will post the webinar on our YouTube channel where subscribers will receive a notification that it is posted.

Dr. Aravamuthan, a doctor specializing in cerebral palsy, with dark hair back over her white lab coast smiling.

New Publication on Cerebral Palsy

Bhooma Aravamuthan, M.D., DPhil. A smiling woman with long dark hair is wearing black rimmed glasses and a white lab coat.

Dr. Aravamuthan has championed physicians sharing an etiologic diagnosis with a diagnosis of cerebral palsy.

The Cerebral Palsy (CP) Research Network congratulates investigator Bhooma Aravamuthan, MD, DPhil and her co-authors for the publication of her CP Research Network study entitled “Diagnostic preferences include discussion of etiology for adults with cerebral palsy and their caregivers.” The publication, released in the journal Developmental Medicine and Child Neurology in January 2022, describes the results of her survey of community members about the importance of understanding their possible etiologies (origins) of CP. The results of the study indicate that most community members with a diagnostic preference would want to know both their CP diagnosis and any information about their potential etiologic diagnoses.

Dr. Aravamuthan has been a strong advocate for shifting the practice of clinicians that make a CP diagnosis to include information that is important to families for numerous reasons. This article concludes that physicians should change practice to include all information about etiologic diagnoses with their CP diagnosis. This may include, in some situations, stating that the etiologies of a person’s CP are not known.

“Based on survey work we have done with clinicians, many tend to provide either a diagnosis of CP, or a diagnosis describing the etiology of CP, but not both,” said Dr. Aravamuthan, a pediatric movement disorders neurologist as Washington University in St. Louis. “But this study shows that families value the services and the sense of community of having both diagnoses when available.”

The red cover of Developmental Medicine and Children Neurology journal

The full journal article is available to subscribers to DMCN. MyCP members can click on the journal cover to go to the page to view the pre-approved version of the article.

We have made the article in its pre-approved state available to members of the MyCP community. As with many academic publications, this article is not available for free for the general public but the journal allows for authors to post pre-approved versions. MyCP members can find the article in our CPRN Private Archive. Interested community members can join MyCP for free to access this article and other services such as personalized resource recommendations and free adaptive fitness programs.

Cerebral Palsy Photo Contest Winning pictures

Cerebral Palsy Awareness Day 2022

Today, March 25, is the federally recognized Cerebral Palsy (CP) Awareness Day! We are excited to announce the winners for our inaugural CP Awareness Month photo contest. In February, we began accepting submissions in five categories: creativity, diversity, participation & inclusion, perseverance, and physical activity. Each of the following submissions were selected by leading these categories in votes out of 13,383 counted:

A young girl with cerebral palsy smiles while holding the bottom of her dress above an incoming ocean tide.

Creativity Winner: Michelle Toy: Live every day like Mighty Mara!

A young boy with cerebral palsy uses his gait trainer with determination and glee

Diversity winner: Reena De Asis: Determined to thrive as he reaches out to you and lights up the room. The flames on this joyous toddler’s gait trainer are a reminder that he’s a CP warrior on fire!

A proud young woman with CP, seated in a wheelchair and wearing a blue-and-gold graduation cap and gown, receives her diploma.

Participation & Inclusion winner: Jersey Morrison: Jersey’s Graduation in 2021

A man in a wheelchair with cerebral palsy sits between hospital administrators receiving his fundraising check for $10,000.

Perseverance winner: Gary Lynn: “I have not ever let Cerebral Palsy stop me or define who I am!”

A young boy with hemiplegic cerebral palsy jumps for joy as he heads for a puddle of rain water

Physical Activity Winner: Sarah Board: Jumping for joy despite my hemiplegia!

Congratulations to each of these photographers and subjects for their selection and their prize of $100.

In addition to these winners, the staff and volunteers of the CP Research Network voted for best overall photograph in terms of what represented the CP Research Network’s values, the categories and our focus on wellbeing. The winner is:

An adaptive basketball coach in a wheelchair lifts a boy with cerebral palsy overhead in his own chair to dunk a basketball

Best Overall winner: Dawn McKeag: Slam dunk!

Congratulations to Dawn McKeag for the photo of her son Fin and the coaches their local Y for adaptive basketball and the $500 prize!

In addition to this winner, our team wanted to recognize two pictures for honorable mention:

The Shrader triplets, two of whom have cerebral palsy, at graduation

Best photo honorable mention: Carol Shrader: Triplet selfie at Benjamin’s graduation from Belhaven University!

A young man with cerebral palsy in a wheelchair focuses intensely as he aims down his drawn arrow preparing to release it

Honorable Mention: Wesley Magee-Saxton: My 22 year old son, who has CP,  has been perfecting his archery technique with a bow that his dad modified for him. He spent hours practicing and can now almost always hit the target.

Thank you to EVERYONE who participated – submissions, shares and votes. We hope that by sharing pictures and our awareness banners we helped you create awareness for CP and celebrate our vibrant community! Our board will continue to match donations this month 2:1! Wear your green proudly today!

A bar chart shows the age bands and totals for people with cerebral palsy in our national registry.

Cerebral Palsy Registry Update

Headshot of Garey Noritz, M.D. Go to Gary Noritz’s profile

Dr. Noritz, a developmental pediatrician and internal medicine physician, will provide an overview of the current CPRN cerebral palsy registry.

Next Tuesday, March 29, at 8 pm ET, Garey Noritz, MD, the principal investigator of the Cerebral Palsy Research Network’s cerebral palsy registry, will present the latest findings from our registry for our next MyCP webinar. He is a developmental pediatrician and an internal medicine physician at Nationwide Children’s Hospital who treats children and adults with CP. The presentation is open to the public and characterizes the patient population – children through adults – that are captured in our national registry. Attendees will learn how the CP Research Network registry collects data and how that data is used to accelerate research. He will also share what we have learned about the more than 5,200 patients enrolled in the registry.

The Cerebral Palsy Research Network was founded out of a need identified by the National Institutes of Health (NIH) to establish a national registry for cerebral palsy (CP). Unlike countries with socialized medicine such as Australia or Sweden, surveillance of CP at a national level in the United States is exceedingly difficult and prohibitively expensive. The CP Research Network chose to build a “clinical” registry rather than a surveillance registry with the main difference being a focus on children and adults who were treated for CP rather than only whether they were born with CP. A clinical registry is an essential tool for planning research for CP, providing preliminary data to increase research funding success, and improving the treatments and outcomes for people with the condition.

MyCP webinar subscribers will automatically receive an email with the link to the webinar. If you are interested in joining this webinar or signing up for our series, register at: https://cprn.org/mycp-webinar-series/. If you cannot make the webinar, we will post a recording on our website and on our YouTube channel.

CP Awareness Month Begins

CP Awareness Month Begins!

A young woman with cerebral palsy leans on a tree while hiking.

Come back every day to vote for YOUR favorite pictures.

Join the Cerebral Palsy (CP) Research Network in our activities to celebrate National CP Awareness month. This recognized month is a great opportunity for us to create awareness about living with CP for the general public to help fund research, support disability policies, and to promote inclusion. There is so much you can do to help the community:

  1. In February, we gathered photos for our CP Awareness photo contest. You can vote for the best picture in each of five categories on our website. We will be awarding a total of $1,000 in cash prizes to the winners on national CP Awareness Day – March 25! Go vote for your favorites – and share them on social media to get more votes.
  2. We have CP facts as Facebook banners that you can download and use to spread the word. We will be posting a CP fact every day on our Facebook and Instagram – feel free to share those!
  3. You can buy CP Research Network merchandise at our Bonfire store and wear green through the month! A portion of the proceeds is donated to our work!
  4. You can donate or start a Facebook fundraiser – our board with 2X match the donations you give or raise throughout the month of March!

Please help us in our efforts to spread awareness for cerebral palsy!

A woman in a chair lifting weights, a girl swimming in a triathalon, a college graduate seeking work and triples in a swing.

Cerebral Palsy Awareness Photo Contest

Young man with cerebral palsy sits in his red walker, while facing the ocean on the sandy beach.In advance of Cerebral Palsy Awareness Month, which runs each year throughout the month of March, the Cerebral Palsy Research Network has launched a photo contest to highlight the lives and experiences of community members living with CP. The contest invites members of the community to submit up to five photos photos that depict their day-to-day life, adventures, challenges, joys, and journey. The CP Research Network has opened its gallery of submissions and will award $1,000 in cash prizes to five winners on March 25, 2022 – the day officially designated as National CP Awareness Day in the United States.

“We find that the CP community is underrepresented in so many forms of media today,” said Paul Gross, President and CEO of the CP Research Network. “As an example, stock photography agencies have very limited authentic photographs of the lived experience for people with CP.” The CP Awareness Photo Contest seeks to develop a rich set of authentic photos of people with CP that can be used in the CP Research Network’s growing cerebral palsy awareness campaigns for March and beyond!

The CP Awareness Photo Contest is opens today on CPRN.ORG. Contestants must be members of MyCP and may participate as an advocate, clinician, researcher or community member Prizes will be awarded as follows:

Category Prize
Creativity $100
Diversity $100
Participation and inclusion $100
Perseverance $100
Physical activity $100
Best Overall $500

Winners will be chosen via a combination of votes and final selection by the CP Research Network. Contestants must sign a photo release as part of the entry process. Photos will be displayed on CPRN.ORG and CP Research Network social media channels. Detailed rules for entries can be found on the photo contest rules page. Dig through your archives or snap a new picture and submit it soon!