Cerebral Palsy Research Network - CPRN

04/27/2026

Join our next “Genetic Causes of CP” webinar this Wednesday, April 29 at 8 PM ET to hear Dr. Bhooma Aravamuthan break down why genetic testing matters, alongside a real family perspective from Rachel Hopper. Building on our earlier session, this conversation focuses on what comes next, who should consider testing, and how it can shape care, diagnosis, treatment and decision-making for families. You’ll also hear why testing may be recommended for everyone with CP, why comprehensive options like whole genome or exome sequencing matter, and how identifying a genetic cause can make a difference across the lifespan.

Learn more and register: https://cprn.org/should-everyone-with-cp-get-genetic-testing/

04/21/2026

Did You Know? 💚

People with cerebral palsy can also have health conditions that are unrelated to their CP diagnosis.

Sometimes, new symptoms reported by people with CP can be incorrectly assumed or dismissed as “part of having CP" when they could be caused by a separate issue/s that need their own treatment or management.

Listen to your body and let your healthcare team know about any changes in your health. And if your symptoms are not found to have another cause, ask about ways to better address your symptoms and concerns.

ID: A graphic with a light beige background features the headline “DID YOU KNOW?” in green and bright pink text at the top. In the center, inside a large green oval, the graphic reads: “People with cerebral palsy can also have health conditions that are unrelated to their CP diagnosis,” with the word “unrelated” highlighted in pink. Decorative green brush strokes and white grid lines frame the corners. The bottom of the image includes the CP Research Network logo and the website cprn.org.

04/20/2026

At the Cerebral Palsy Research Network, we are always learning, asking questions, and working to improve care for people with CP across our network of participating hospitals and beyond.

Through research, process improvement, collaboration, and knowledge sharing, we are helping hospitals learn from one another and improve the well-being of people with CP and their families.

Take a look at how it all comes together. 💚

Together, we are building a stronger, more informed future for people with CP.

Please consider supporting this important work with a donation:
🔗 https://cprn.org/donate/

04/17/2026

Did you know that genetics can play a role in cerebral palsy? Cerebral palsy is a descriptive term, that does not point to one cause/etiology. There are many different ways the developing brain can be impacted in early infancy that interfere with the creation and coordination of movement that is classified as CP. One possibility is a genetic change.

Approximately 25-30 percent of people with CP have a genetic change associated with their CP symptoms. Genetic information can be vital to identifying and addressing specific health concerns associated with genetic changes that may otherwise be overlooked. You CAN have a dual diagnosis of something genetic and a diagnosis of CP.

Formal genetic testing guidelines specific to cerebral palsy are now being developed by the American Academy of Neurology.

Ask your healthcare providers if you are interested in more information about genetic testing for yourself or your loved one with CP. For more information about genetics in CP visit our website: https://cprn.org/genetic-cerebral-palsy/ and follow our genetics in CP webinar series. https://cprn.org/mycp-webinar-series/

If you missed the first webinar you can access it here: https://cprn.org/cprn-recording-download/?recording=https://youtu.be/kak-3I_nORY&recordingname=Genetic%20Causes%20of%20CP%20Webinar%201

ID: A smiling young child with short blonde hair and blue glasses looks up toward the camera. They are wearing a dark green T-shirt with a mountain graphic and are seated indoors, with a softly blurred background featuring red and neutral tones.

04/16/2026

Missed our webinar, “Our NICU Registry – Progress for Hypoxic Ischemic Encephalopathy”? The replay is now available. 💚

During HIE Awareness Month, we’re sharing an important update on our work to build a registry that follows babies born with hypoxic ischemic encephalopathy (HIE) from the NICU through childhood and beyond.

With support from the Pediatric Epilepsy Research Foundation and in partnership with Hope for HIE Foundation and the Newborn Brain Society, we’ve shown that it is possible to securely connect NICU medical data with the experiences shared by parents and caregivers.

Why does this matter? Because many of the challenges children with HIE face do not appear until years later, and families deserve research that reflects what matters most in real life.

Watch the replay to learn:
• Why a long-term HIE registry is needed
• What we accomplished in this first phase
• What comes next as we seek to expand this work nationwide

Together, we can build research that listens to families and helps shape a better future for children with HIE.

Watch the replay:

About 18 months ago, we shared an exciting idea with the community: what if we could extend our registry so that it tracks babies born with hypoxic ischemic ...

04/15/2026

📣 Community Spotlight 📣

Attention community members! This summer, HA CONNECT, the world's largest hydrocephalus conference will take place in the US.

🗓 July 23–25, 2026
📍 Indianapolis

This important gathering hosted by our friends from the Hydrocephalus Association offers a space to connect with the hydrocephalus community through interactive educational sessions, research updates, and meaningful discussions led by world-renowned experts.

👉 Learn more and register:

Attend HA CONNECT, the world’s largest hydrocephalus conference. July 23-25, 2026 at the JW MARRIOTT in Indianapolis, IN.

04/14/2026

“In 1990, I was diagnosed with cerebral palsy. Like many in the community, my parents were told explicitly that the condition has no genetic roots. Now, as research suggests that up to 30% of cases have genetic etiologies, robust community engagement is needed to ensure that the perspectives of the community shape the future of genetic research into cerebral palsy.”

– Kevin Mintz, PhD, Department of Bioethics, Stanford University
Source: https://doi.org/10.1038/s41588-025-02445-2

Dr. Mintz, a researcher who also has cerebral palsy, focuses on disability bioethics and the ethical, legal, and social implications of genetics and genomics at the Stanford Center for Biomedical Ethics. Right now he is working with the Network to study community views in studying genetics in people with CP. Thank you Dr. Kevin for spearheading this important research that will bring awareness of community views in CP research!

ID: A beige graphic from the Cerebral Palsy Research Network features a large stylized quotation mark and the CPR Research Network logo in the upper right corner. The quote reads: “In 1990, I was diagnosed with cerebral palsy. Like many in the community, my parents were told explicitly that the condition has no genetic roots. Now, as research suggests that up to 30% of cases have genetic etiologies, robust community engagement is needed to ensure that the perspectives of the community shape the future of genetic research into cerebral palsy.” The words “cerebral palsy” and “genetic etiologies” are highlighted in bright green. At the bottom, the quote is attributed to Dr. Kevin Mintz in a green nameplate.

04/10/2026

🗣️ Let’s Talk CP! 💚

What’s happening in the MyCP Discussion Forum? 🧠💬

🟢 Headaches & Secondary Conditions as an Adult
🟢 Feeling Like You Can't Control Your Body
🟢 Freezing of Gait in Cerebral Palsy
🟢 What is Your Anthem for Cerebral Palsy?

Your experiences matter. Your voice matters. Join MyCP to connect, share, and stay informed about cerebral palsy research and real-life experiences. Together, we’re shaping the future of CP care!

🔗 Join today: https://cprn.org/mycp/joinmycp/

ID: A green graphic with the headline “Let’s Talk CP!” and “What’s happening in the MyCP Discussion Forum?” Featured discussion topics appear in speech bubbles or text boxes and include: “Headaches & Secondary Conditions as an Adult,” “Feeling Like You Can't Control Your Body,” “Freezing of Gait in Cerebral Palsy,” and “What is Your Anthem for Cerebral Palsy?” The graphic encourages viewers to join MyCP to connect, share experiences, and stay informed about cerebral palsy research and real-life experiences, with a link to join today.

04/09/2026

New research on Selective Dorsal Rhizotomy (SDR) from our Network has revealed broad differences in techniques/approaches used for SDR surgeries. SDR is a common surgery used to reduce spasticity in children with cerebral palsy (and adults at some hospitals).

The study, published in Journal of Neurosurgery: Pediatrics, looked at data from 564 children at nine hospitals who had SDR surgery. The study team found variation in who receives the surgery, how it is performed, and how pain is managed afterward. These findings are an important first step toward understanding which approaches lead to the best outcomes for children with CP. Congratulations to Dr. Brandon Rocque, the leading author on the publication, the Network's surgical spasticity study team and all of the Network sites that contributed to this effort.

1. The published article is open access (free to view): https://doi.org/10.3171/2025.11.PEDS25497
2. Read more about this research effort on our blog: https://cprn.org/blog/
3. Check out our last SDR webinar: https://youtu.be/aUGyRbCacbQ?si=kiLew9Kstm8RSnf6

ID: Graphic from the Cerebral Palsy Research Network April blog. At the top, the CPRN logo appears above the headline, “Our Network’s Care & Treatment Update! Selective Dorsal Rhizotomy (SDR).” Below the text is a photo of an adult with short gray hair holding hands with a child in a red sweater and shorts as they practice movement together in a therapy space.

04/07/2026

💡 : Looking for practical tools, information, and support for life with cerebral palsy?

The Cerebral Palsy Research Network offers free toolkits/resources to support individuals with CP, family members, and their caregivers!

• The CP Tool Kit
• The Dystonia in Cerebral Palsy Toolkit
• The Wellbeing Guide for Parents and Caregivers
• NEW! The Adult Cerebral Palsy Toolkit

Whether you are newly navigating a diagnosis, supporting a loved one, or looking for resources for adulthood, there are a lot of resources here for the community!

Explore all of the toolkits: https://cprn.org/our-toolkits/

04/06/2026

Did You Know? 💡

About 40–45% of people with cerebral palsy also have a diagnosis of epilepsy. Epilepsy is a neurological condition that causes seizures and is one of the most common co-occurring conditions in people with CP.

Seizures happen when there is a sudden surge of electrical activity in the brain. They can affect movement, behavior, sensations, awareness, or muscle tone, and may appear differently from person to person. Epilepsy is usually diagnosed after someone has experienced at least two seizures.

Understanding the connection between CP and epilepsy can help families and healthcare providers recognize symptoms earlier and get the right support in place.

Learn More: https://cprn.org/cerebral-palsy-epilepsy/

04/02/2026

Join us Thursday, April 9, at 8:00 p.m. ET for an important update on the progress of our NICU Registry for Hypoxic Ischemic Encephalopathy (HIE).

Over the past 18 months, the Cerebral Palsy Research Network and Hope for HIE have been working to build a registry that follows babies with HIE from the NICU through childhood and beyond, combining medical records with families' experiences.

We are excited to share what we have learned, accomplished, and what comes next.

Hear from:
• Dr. Danielle Guez-Barber, Principal Investigator for the HIE Registry
• Betsy Pilon, Executive Director of Hope for HIE
• Dr. Joyce Trost, Vice President of CP Research Network

Join us to learn and discuss more about this groundbreaking work!

*Wondering what a registry refers to? It's information/data gathered about people with a common health condition.

📅 Thursday, April 9
🕗 8:00 p.m. ET
🔗 https://cprn.org/blog/

ID: A promotional graphic with a teal and light green background announces a live webinar titled “Update on the HIE Registry!” A photo in the top right shows a newborn baby resting in a NICU incubator. The graphic explains that the webinar will provide an update on a new registry tracking babies with hypoxic ischemic encephalopathy (HIE) from the NICU through childhood. It notes that, with support from the Pediatric Epilepsy Research Foundation, the registry now connects hospital records and parent-reported experiences through a privacy-protected system. The webinar will cover progress so far, plans to expand the registry nationally, and ways families can help shape the future of the work. At the bottom, the date and time are listed as Wednesday, April 9, 2026, at 8:00 PM ET / 5:00 PM PT, along with the Cerebral Palsy Research Network logo.

The Cerebral Palsy Research Network discusses is progress in building NICU registry for capturing clinical details of HIE.