Cerebral Palsy Research Network (CPRN)

?? Missed last week’s webinar? Watch the replay now! ?? Learn about the groundbreaking collaboration between the CP Research Network, Hope for HIE Foundation - Hypoxic Ischemic Encephalopathy and the Newborn Brain Society to create an HIE Registry. Hear from Dr. Danielle Guez Barber, Betsy Pilon, and Paul Gross on this important initiative. Watch Below ????

The CP Research Network recently launched the Dystonia in CP (DCP) Toolkit—a comprehensive resource for individuals with CP, their families, and caregivers. ?? ?? Get your DCP Toolkit! Become a member of MyCP https://lnkd.in/dz8Qb6nT to access your free digital copy of the DCP Toolkit! https://lnkd.in/d3W9WP6w ?? Current members may access the DCP Toolkit by logging into their MyCP account and clicking on the following link: https://lnkd.in/d3W9WP6w Image Description: The image promotes the "Dystonia in Cerebral Palsy Toolkit," showcasing a booklet cover with a pink water lily and smaller photos of individuals. It highlights a resource for people with dystonia in CP, their families, caregivers, and clinicians.

'Out of My Mind' is now available on Disney+ today! This movie features Melody Brooks, a sixth grader with cerebral palsy, who has a quick wit and a sharp mind, but because she is non-verbal and uses a wheelchair, she is not given the same opportunities as her classmates. When a young educator notices her students' untapped potential, Melody starts to participate in mainstream education, showing that what she has to say is more important than how she says it. ?? Watch Out of My Mind today, and let's keep the dialogue alive about fostering inclusion and dismantling barriers for everyone!

CP Research Network Launches Groundbreaking Dystonia in CP Community Resources Do you or someone connected to you have dystonia in CP? Did you know that studies show that approximately 70 percent of people with CP have some type of dystonia present? ??Important News! The CP Research Network proudly launches the Dystonia in CP (DCP) Toolkit—a comprehensive resource for individuals with CP, their families, and caregivers. Explore the new dystonia section on our website and watch our new community video, where people share their diverse experiences and perspectives on dystonia in CP. ?? Get your DCP Toolkit! Become a member of MyCP https://lnkd.in/dz8Qb6nT to access your free digital copy of the DCP Toolkit! https://lnkd.in/d3W9WP6w ?? Current members may access the DCP Toolkit by logging into their MyCP account and clicking on the following link: https://lnkd.in/d3W9WP6w ?? Read more on our blog for the history behind our DCP community effort and the current and future direction of care, treatment, and research for DCP: https://cprn.org/blog/ Image Description: A diverse group of people gathers in a bright, open space, smiling and waving at the camera for a group photo. A professional setting with name tags visible on several participants.

#TipTuesday | Did you know that caregivers can provide valuable insight to help providers determine if you or your child may have dystonia in cerebral palsy (DCP)? Join MyCP, the CP Research Network Community portal, to access your FREE digital copy of the DCP Toolkit this week → https://cprn.org/mycp/ Image Description: Pink background with green accents and pink copy

Last Call to Sign up for Tonight's Webinar! ?? ?? Tuesday, November 19 ?? 8pm ET via Zoom Danielle Guez Barber MD PhD, CP Research Network CEO Paul Gross, and Hope for HIE Executive Director Betsy Pilon discuss their collaborative efforts to build a registry for hypoxic ischemic encephalopathy or HIE, which is a common brain injury around birth that can lead to cerebral palsy and other co-morbidities such as epilepsy. Dr. Barber will describe the vision and progress toward building this registry using the CP Research Network CP registry infrastructure and the types of research that will make it possible. Register for this FREE Live Webinar: https://lnkd.in/edHe5pzB Image Description: Headshots of Paul Gross, CP Research Network CEO; Danielle Guez Barber, MD, PhD, Neurologist at Children's Hospital of Philadelphia; and Betsy Pilon, Hope for HIE Executive Director. The graphic uses green and white tones.

?? COMING SOON: The Dystonia in Cerebral Palsy Toolkit – A FREE Resource! ???? We're excited to share a valuable resource designed for individuals with dystonia in cerebral palsy, their families, caregivers, and healthcare providers. The Dystonia in Cerebral Palsy Toolkit offers comprehensive information on the definition, diagnosis, current treatment options, and real-life experiences related to dystonia in CP. → Sign Up to Be Notified When it Becomes Available: https://lnkd.in/ePJeuHMp Image Description: Two woman one with gray hair wearing glasses and another with dark brown hair. They have a laptop in front of them and there is a graphic showing a picture of the Dytonia in CP Toolkit. There is also a CPRN logo on the bottom left of the graphic.

?? Join us on Tuesday, November 19 at 8 pm ET, as Danielle Guez Barber MD PhD, CP Research Network CEO Paul Gross, and Hope for HIE (Hypoxic Ischemic Encephalopathy) Executive Director Betsy Pilon discuss their collaborative efforts to build a registry for hypoxic ischemic encephalopathy or HIE which is a common brain injury around birth that can lead to cerebral palsy and other co-morbidities such as epilepsy. Dr. Barber will describe the vision and progress toward building this registry using the CP Research Network CP registry infrastructure and the types of research that will make it possible. Join us for this FREE Live Webinar: https://lnkd.in/edHe5pzB Image Description: Headshots of Paul Gross, CP Research Network CEO; Danielle Guez Barber, MD, PhD, Neurologist at Children's Hospital of Philadelphia; and Betsy Pilon, Hope for HIE Executive Director, all in a green-outlined circle. The graphic uses green, yellow, and white tones.

Catch up on our latest MyCP webinar! Dr. Bhooma Aravamuthan and Michele Shusterman share exciting progress in the CP community—from new educational materials to advances in dystonia diagnosis and treatment studies. Watch below to learn how community input shapes research and helps us capture the true experience of dystonia in CP. ??

?? We are pleased to announce that the Cerebral Palsy Research Network is partnering with Hope for HIE (Hypoxic Ischemic Encephalopathy) and the Newborn Brain Society to expand our research efforts into the Neonatal Intensive Care Unit (NICU). This new collaboration focuses on early causes of cerebral palsy?and other co-morbidities?through a dedicated registry for Hypoxic Ischemic Encephalopathy (HIE). Under the scientific leadership of Dr. Danielle Guez Barber, MD, PhD, and Dr. Zach Vesoulis,?CP Research Network?will collect critical data on HIE patient care across NICUs, helping advance our understanding of treatment outcomes and interventions. This initiative, funded with a $100,000 grant, will also support a parallel registry, allowing families to share their experiences and track long-term outcomes. We invite you to join us on Tuesday, November 19, at 8 pm ET for a free MyCP webinar. Dr. Barber,?CP Research Network?CEO Paul Gross, and Hope for HIE’s Executive Director Betsy Pilon will look at these exciting research initiatives in-depth. Read the announcement:?https://lnkd.in/eJG6S-em Image Description: A newborn baby viewed through the hand access hole in an isolette.