Cerebral Palsy Research Network - CPRN

Did you know that cerebral palsy is the most common lifelong physical disability in the world?

Learn more about cerebral palsy by visiting our website: https://cprn.org/

Video description: CP Research Network logo in the lower left corner and green and black text on a white background.

🧠✨ Part 4: Dystonia in Cerebral Palsy - Dystonia Impacts Lives Tremendously 🌟

Dystonia and cerebral palsy together can profoundly affect everyday life. In this video, hear firsthand from Danielle and Lauren Tinsley about the physical, emotional, and social impacts they navigate daily.

💡 Stay tuned for Part 5!

Video description: The title page has the CP Research Network logo at the top center and green text on a white background. The video is of a woman and her daughter talking against a white background. The woman is wearing white and black while her daughter is wearing pink. The disclaimer page at the conclusion of the video is green text and the Neurocrine Biosciences logo is on a white background.

🧠✨ Part 3: Dystonia in Cerebral Palsy - Expertise and Research is Still Needed🌟

Our incredible community members have raised their voices to highlight the urgent need for more information and expertise on dystonia in cerebral palsy. Despite some advancements, there’s still so much we need to learn to provide the best care and support for individuals affected by it.

Watch the video, share it, and join us in advocating for more research and awareness. Every voice counts!

💡 Stay tuned for Part 4!

Video description: The title page has the CP Research Network logo at the top center and green text on a white background. Video one is of a woman wearing pink talking against a yellow background. Video two is of a woman wearing brown and black talking against a tan background. The disclaimer page at the conclusion of the video is green text and the Neurocrine Biosciences logo is on a white background.

Did you know? Spinal stenosis is a common yet under diagnosed condition in adults with cerebral palsy. It refers to a narrowing or compression of the spinal canal and/or the spinal nerve root passages in the neck (cervical) sometimes resulting in injury (myelopathy). Adults with CP are 8 times more at risk for myelopathy than the general population.

👉 Have you been screened for spinal stenosis?

Learn more about cerebral palsy by visiting our website: https://cprn.org/

Video description: CP Research Network logo in the lower left corner and green and black text on a white background.

✨ Happy Relaxation Day!

It’s important to take a break and find peace in our favorite activities. It helps us recharge, reduces stress, and enhances overall wellbeing! Check out some of our community members enjoying their unique ways to relax.

Share your favorite way to relax in the comments 💬👇

Video description: Image one is of a young boy in a walker smiling and playing with a toy. Image two is of two young girls sitting on a couch. Image three is of a young girl lying on a chair wearing a bathing suit and sunglasses. Image four is of two young boys smiling while one is standing and the other is in a pink adaptive chair. Image five is of a woman outside smiling with her camera. Image six is of a community member playing a game of Uno. Image seven is of a young man wearing a hat, sunglasses, green shirt, and blue shorts enjoying the lake on an adaptive float. Image eight is of a girl wearing pink, black, and foot braces doing ballet in front of a mirror.

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🧠✨ Part 2: Dystonia in Cerebral Palsy - Diagnosis is a Huge Relief 🌟

Receiving a diagnosis of dystonia can be a huge relief for individuals with cerebral palsy and their families. It opens the door to more targeted treatments and better management strategies. However, if dystonia goes undiagnosed, individuals may continue to struggle with unmanaged symptoms and less effective treatment plans.

💡 Stay tuned for Part 3!

Video description: The title page has the CP Research Network logo at the top center and green text on a white background. Video one is of a woman wearing blue talking against a white background. Video two is of a man wearing black talking against a white background. The disclaimer page at the conclusion of the video is green text and the Neurocrine Biosciences logo is on a white background.

📚✨ Our CP Tool Kit is available in print and online!

CP Research Network’s comprehensive CP Tool Kit is a supportive resource for families and caregivers who recently received a cerebral palsy diagnosis. Whether you prefer a print copy or a digital subscription, our Tool Kit is packed with valuable information to guide you on this journey.

👉 Visit our website at https://cprn.org/ to purchase a print copy or subscribe and download the CP Tool Kit for FREE!

🧠✨ Part 1: Dystonia in Cerebral Palsy - Understanding the Link to Cerebral Palsy 🌟

Dystonia is formally defined as voluntary movement-triggered overflow muscle activation. So what does that mean? Every time you try to move or someone tries to move you, a part of your body that you did not intend to move, moves out of your control. In addition to movement triggers, Dystonia can also be triggered by stress or excitement.

In this video series, we'll dive deep into what dystonia is and its connections to cerebral palsy. how it's connected to cerebral palsy. Knowledge is power, and understanding these conditions helps us support each other better.

💡 Stay tuned for Part 2!

Video description: The title page has the CP Research Network logo at the top center and green text on a white background. The video is of a woman wearing blue talking against a white background. The disclaimer page at the conclusion of the video is green text and the Neurocrine Biosciences logo is on a white background.

⭐ Meet Ed Hurvitz - PART 2 ⭐

Edward A. Hurvitz, MD, Professor of Physical Medicine & Rehabilitation (PM&R) at the University of Michigan, focuses his research on adolescents and adults with CP, particularly health and fitness, health outcomes, and transitioning to adulthood. Formerly the James W. Rae Collegiate Professor and Chair of PM&R (2006-2024), he is also a member of the CP Research Steering Committee. Dr. Hurvitz emphasizes the significance of clinical research for adults with cerebral palsy and the challenges involved.

Video description: Ed Hurvitz, MD wearing a white shirt and a blue and yellow tie talking against a white background. Video one is of a cerebral palsy community member wearing orange and black at the gym using a machine for a physical therapy workout.

⭐ Meet Judy-April Murayi, MD, RD - PART 2 ⭐

As a Pediatric Gastroenterology Fellow at Nationwide Children’s Hospital and with experience as a general pediatrician and registered dietitian, Murayi appreciates the open arms and availability of the CP Research Network. She’s thrilled to know that the integration of families and their needs within research is at the core of what we do 🙌

Video description: Judy-April Murayi MD, RD wearing tan and yellow talking against a white background. Image one is from a research conference presentation with members of the CP Research Network community.

Did you know braces and splints use external force to correct muscle abnormalities and improve function while other orthotics help stretch muscles or the positioning of a joint?

Curious to learn more about cerebral palsy? 💚 Give us a follow to keep learning and staying informed.

Video description: CP Research Network logo in the lower left corner and green and black text on a white background.

⭐ Meet Julie Stutzbach, PT, DPT, PhD - PART 2 ⭐

Stutzbach is grateful for the networking opportunities and community engagement available through the CP Research Network 💚

Video description: Julie Stutzbach, PT, DPT, PhD wearing a white shirt and black jacket talking against a white background. Image one is of a man smiling in a wheelchair wearing a blue shirt and white hat.

Why should you join MyCP? 💚 By joining MyCP, you may take part in discussions with research clinicians and other members of the community, and get access to personalized resources.

Click the link here to join MyCP 👉 https://cprn.org/mycp/joinmycp/

Video description: White, green, and black text in a white box on a green background. The white CP Research Network logo is in the bottom center.

⭐ Meet Deborah Hirtz, MD, MA - PART 1 ⭐

Deborah Hirtz, MD, MA is a pediatric neurologist who joined the faculty of the University of Vermont in 2015. After training in Pediatrics and Child Neurology in Washington DC, she had a long career as a program officer at the National Institute of Neurological Disorders and Stroke, where she mentored and collaborated with many investigators, and participated in many networks and clinical trials.

Throughout her career, Hirtz has worked with a variety of researchers and communities of people, who had or had children with pediatric neurologic disorders.

Video description: Deborah Hirtz, MD, MA wearing a black shirt talking against a tan and brick background. Image one is a roundtable photo from a research conference with various community members.

Did you know this fact about cerebral palsy and epilepsy?

Approximately 40-45% of people with cerebral palsy have epilepsy.

Learn more about cerebral palsy and epilepsy by visiting our website: https://cprn.org/cerebral-palsy-epilepsy/

Video description: CP Research Network logo in the lower left corner and green and black text on a white background.