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 Stories: Alexander and Lisa Diller

A young man with cerebral palsy dressed in a scouting outfit and smiling hugs his mother in a black sweater and striped shirt.

Alexander Diller, a young man with CP from his premature birth, hugs his mother Lisa, during a scouting event.

Like so many others with cerebral palsy (CP), Alexander was born premature, at 27.5 weeks. While on an oscillating ventilator, the endotracheal tube scraped the back of his throat, triggering a bilateral pulmonary hemorrhage. In turn, the hemorrhage caused intraventricular bleeding, which resulted in hydrocephalus. It would be nine weeks before Alexander was discharged.

During his nine-week stay at the hospital, Alexander’s parents—Lisa and Tim—began their advocacy, working alongside a neonatologist to ensure that Alexander had regular skin-to-skin contact. While this practice is common today, it was rare twenty years ago. Because pediatric neurologists often prefer to wait before making the diagnosis, Alexander would be three before he was formally diagnosed with CP. But as a physical therapist with advanced neurologic training, Lisa suspected it from early on: the month Alexander arrived home, Lisa said, he “began to show signs of lower extremity spasticity and other movement patterns characteristic of spastic diplegia.”

Growing up, Alexander has faced the kind of ableist pushback that young people with CP and their parents have come to expect. As Lisa and Tim prepared him for kindergarten, they settled upon a private school that they thought was best equipped to meet his needs. The school initially expressed reservations about their ability to accommodate Alexander, but after Lisa, Tim, and Alexander’s preschool teacher, Pat, assured the school that Alexander’s needs were as simple as finding a chair that allowed his feet to touch the floor, he was accepted. Later, in high school, Alexander would compete in impromptu and extemporaneous speaking, only to be docked points for his “walking style.” Some judges even went as far as commenting that he should “fix it.”

Alexander has taken these challenges in stride: he was talkative and outgoing from an early age. He has maintained an active, fulfilling extracurricular life in high school, consistently qualifying for impromptu and extemporaneous speaking tournaments[1] at both the state and national levels despite insensitive comments from judges. But the transition into high school did present its own challenges. “We had an influx of new freshmen that I met for the first time,” Alexander said. “I also had new teachers. A lot of it was explaining my CP or answering their questions.”

There were, too, the stares and the speculation from students Alexander didn’t know personally. They wondered whether his CP implied an intellectual disability, something that folks with physical disabilities often must contend with. “Sometimes there were assumptions that because I had CP I wouldn’t be capable academically,” Alexander said. Working with a psychologist who also has CP guided Alexander through the transition. Hearing from someone who had faced similar challenges helped Alexander develop strategies to better understand his own feelings.

Adults with CP have served as valuable mentors for Alexander. During his time with Boy Scouts—he recently attained the rank of Eagle Scout with a silver palm in 2021—Alexander met Steve, a Scoutmaster who also happened to have CP. Alexander has relished the physical challenges that scouting entails. During the same summer he met Steve, Alexander successfully completed a 50-mile hike over a 12-day period with his troop at Philmont Scout Ranch in Cimmaron, New Mexico. Later that summer, he then completed a 50-mile bike ride in seven hours on the Olympic Peninsula.

Scouting aside, Alexander is also an avid Aikido enthusiast and will be testing for his first-degree blackbelt in March. Lisa and Tim made it a point to foster Alexander’s interests from an early age. Some of this was pragmatic: This passion has helped Alexander physically, particularly with his strength, balance, and coordination skills. But it has also helped him develop a strong sense of independence. “Aikido has allowed Alexander to practice with his peers and teach younger students,” said Lisa.

The parents of children with CP inevitably become experts as the child ages, but Lisa’s background in physical therapy has also informed her approach to Alexander’s CP. “I feel my educational background, connections to my peers, and access to current research has enabled me to make educated and informed decisions about Alexander’s care and advocate for him when needed,” said Lisa. “It has also enabled me to teach Alexander from an early age how to advocate for himself.”

As Alexander transitions into adulthood, his independence will undoubtedly prove useful. He recently turned eighteen, starting to cross “the unsteady bridge from pediatric to adult care,” as Lisa called it, that both researchers and advocates alike realize is a critical time. As an educator and provider of adult neurological interventions herself, Lisa has made it a point to stay informed about current research so that she can help guide Alexander during the transition.

Now that Alexander is eighteen, he has started taking the CPRN registry surveys with the hope of contributing to the improvement of treatment interventions for individuals with CP. He graduates from high school in June 2022, and either D.C. or the Northeast seem like the most likely landing spots for college. He will study international relations and global health, ideally with an emphasis on East Asia (he has been learning Mandarin since he was six). “I’d like to involve myself in diplomacy and create policy that’s based on the needs of a community,” said Alexander. What he ends up doing, of course, will be up to him. But it’s abundantly clear that Alexander’s future is bright.


[1]An impromptu speech tournament requires participants to prepare a speech on an unplanned topic in just a few minutes.

Dr. Kristie Bjornson in a bright green CPRN shirt and holding an orthotic.

CP Research Network Hires Scientific Director

Kristie Bjornson, PT, PhD. A smiling woman with blond hair, wearing a black vest over maroon turtleneck in a hospital hallway.

Kristie Bjornson, PT, PhD, MS, has been hired by the CP Research Network to be the Scientific Director.

The Cerebral Palsy Research Network hired Kristie Bjornson, PT, PhD, MS to lead its scientific direction. Dr. Bjornson, featured in our CP Stories in April 2021, is a leader in the field of research for cerebral palsy. In her new role, Dr. Bjornson will lead the network’s effort to pursue public funding from granting agencies such as the National Institutes of Health, the Patient-Centered Outcomes Research Institute and the National Institute on Disability Independent Living and Rehabilitation Research. Dr. Bjornson brings multi-center clinical trial experience for various interventions for CP (i.e. surgery, injections, orthoses, and rehabilitation).

“I’m excited to merge my experience in clinical research in cerebral palsy with the power of the network,” said Dr. Bjornson. “There are so many important to questions to answer for our community and the network is a highly efficient way to conduct this research.”

In addition to her role as Scientific Director, Dr. Bjornson will continue as a site principal investigator for Seattle Children’s Hospital (SCH) where her first-hand experience with our registry will be invaluable to our future research endeavors as she has real world experience with how the registry can be used to make clinical research more effective. Under her leadership, SCH has become a significant contributor to the richness of data in the network’s cerebral palsy registry as SCH has enrolled its entire CP population. Understanding and leveraging the registry to plan new research studies is a great strength that Dr. Bjornson brings to the network.

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!

Dr. Rimmer, with rimless glasses, in a brown coat, white shirt and red tie with Dr. Peterson in a dark blazer and blue shirt.

Webinar on Wellness for Adults with CP

A white placed holder with 'wellness' written across it for the Webinar on Wellness for Adults with CP. The Cerebral Palsy Research Network will offer an informational webinar on wellness for adults with CP on February 23 at 5 pm ET. Earlier in February, we announced that we had partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer a free eight-week virtual course on mindfulness, exercise and nutrition (MENTOR) for people with CP and other disabilities. The webinar will feature NCHPAD Director James Rimmer, PhD and University of Michigan CP researcher Mark Peterson, PhD, discussing the benefits of exercise, mindfulness and nutrition. Several past participants from our pilot of MENTOR in April 2021 will join the webinar to answer questions as well.

“We are excited to share the details of our MENTOR program with members of the CP community,” said Dr. Rimmer. “Past participants recruited by the CP Research Network have helped us shape our wellness program for the CP community.”

Community members interested in learning more about MENTOR can register for the webinar on the MyCP Webinar Series page. If you are interested and cannot attend, you can register to receive an email notification when the webinar is completed and the recording is posted. Please join us.

If you already know about MENTOR and want to sign up, join MyCP or visit your profile and select “sign up for MENTOR”. You will receive an email with an invitation to the program.

Three photos show a woman in a wheelchair lifting weights, a nutritious meal and a peaceful day the beach

Free Mindfulness, Exercise, and Nutrition Course

A cutting board and knife are laid out with healthy ingredients and a fry pan.

One of the core curriculum of MENTOR is nutrition which is of greater importance for people with cerebral palsy for their daily and long term health.

The Cerebral Palsy Research Network has partnered with the National Center on Health, Physical Activity and Disability (NCHPAD) to provide free virtual training classes on mindfulness, exercise and nutrition (MENTOR). NCHPAD is funded through a grant from the Centers for Disease Control to promote opportunities that are crucial to the health of people with a physical disability. The CP Research Network piloted the MENTOR program in April 2021 to provide feedback on the program for people with cerebral palsy (CP). NCHPAD was recently funded for the next five years and chose the CP Research Network as their partner for the CP community.

The MENTOR program is held over eight weeks for one hour a day. Classes meet virtually and have instructors from different disciplines to teach mindfulness, nutritional health and adaptive exercise. Some exercise equipment is provided free of charge. The classes offer optional add-on private coaching to tailor the content for the individual participating. The next class for people with CP will begin in April.

An informational webinar is being planned for February 23 at 4 pm ET with NCHPAD chief executive Dr. James Rimmer and past participants from the CP community. Adults with CP that are interested in learning more should visit our Cerebral Palsy Fitness page or send an email to mentor@cprn.org. Go to our MyCP webinar series page to sign up for the informational webinar.

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!