Cerebral Palsy Research Network - CPRN

Cerebral Palsy Research Network - CPRN Cerebral Palsy Research Network (CPRN) | Community | Research | Education | Wellness

Big thanks to Disability Scoop for featuring our Adult CP Toolkit! 🎉Have you downloaded it or grabbed a copy on Amazon y...
09/05/2025

Big thanks to Disability Scoop for featuring our Adult CP Toolkit! 🎉

Have you downloaded it or grabbed a copy on Amazon yet? 📖✨ We’d love to hear your thoughts—drop your review in the comments below! 👇

https://cprn.org/our-toolkits/

For decades, cerebral palsy resources have focused on the needs of children, but with a new toolkit, that could be changing.

📖 Have you downloaded it yet?The Adult Cerebral Palsy Toolkit launched last week and has already started reaching adults...
09/04/2025

📖 Have you downloaded it yet?

The Adult Cerebral Palsy Toolkit launched last week and has already started reaching adults with CP around the world! 🙌

✅ FREE digital download on our website
✅ Printed copy available for purchase on Amazon

This toolkit is the the largest collaborative community resource we’ve ever developed, and it's for the adult community. It’s filled with health and wellbeing information, practical insights, peer perspectives, and tools to support life as an adult with CP.

We’re grateful to our friends at Ipsen, Cerebral Palsy Alliance Research Foundation, the Weinberg Family Cerebral Palsy Center, and our many generous community and anonymous donors for making this possible.

Don’t miss out—get your copy today! ⬇️
🔗 https://cprn.org/the-adult-cerebral-palsy-tool-kit/

ID: Promotional graphic for the Adult Cerebral Palsy Toolkit, featuring the cover, a quote from Jennifer Pimentel, and a banner highlighting that free resources are now available.

New AAP Report Highlights the Importance of Pediatric Providers Referring Children for AAC Assessments.The American Acad...
09/03/2025

New AAP Report Highlights the Importance of Pediatric Providers Referring Children for AAC Assessments.

The American Academy of Pediatrics (AAP) has released a new clinical report—“Prescribing Assistive Technology: Focus on Children With Complex Communication Needs”—published in Pediatrics on June 16, 2025. This report underscores the crucial role of pediatricians in referring families for communication (AAC) assessments with Speech Language Pathologists (SLPs) or other specialists to help them connect with tools such as picture boards, tablets, and speech-generating devices.

📷 Image description: A child in a wheelchair uses a mounted speech-generating device with a symbol-based communication board, to communicate to their brother that she wants them to hold hands.

This image reflects the heart of the report—AAC technology isn’t just about devices, it’s about opening up connection, independence, and inclusion. With access to the right tools, children can actively participate in everyday life and relationships, just as seen here.

Financial and societal barriers limit the equitable distribution and application of AAC technology. Much of the recent improvement in AAC devices can be attributed to organizations and companies addressing the principles of “universal design,” where the diverse needs of people and their abilities are addressed in the approach to design, such as the use of tablets or text-to-speech technology that some may find convenient. Still, others rely upon it to manage their day. This report highlights the importance of pediatric providers and professionals working together to assess and address the communication needs of young children, thereby supporting their development and addressing existing gaps.

🎨  : Adaptive art can be a powerful tool for creativity and self-expression!This week we’re sharing a resource from The ...
09/02/2025

🎨 : Adaptive art can be a powerful tool for creativity and self-expression!

This week we’re sharing a resource from The Art of Education where adaptive art teacher Erin Smith highlights 10 paintbrushes and grips designed to make painting more accessible.

Many artists in our CP community have told us how important painting is as a form of self-expression and joy. 💚

👉 Check out the video to see each brush in action and explore new ways to bring adaptive tools into your art space!

Paintbrushes are another well-used art supply in our art rooms. Just like there are various pencils and pencil grips for students of all abilities and skill ...

Wishing our community a wonderful Labor Day!
09/01/2025

Wishing our community a wonderful Labor Day!

🎉 Big news from Wednesday! 🎉The Adult Cerebral Palsy Toolkit has officially launched — and it’s available now! 🙌✅ FREE d...
08/29/2025

🎉 Big news from Wednesday! 🎉

The Adult Cerebral Palsy Toolkit has officially launched — and it’s available now! 🙌

✅ FREE digital download on our website
✅ Printed copy available on Amazon

This is our most comprehensive resource ever for adults with CP — designed to meet the growing need for clear, practical, and inspiring information. Inside you’ll find:

🩺 Expert insights from leading clinicians in adult CP care
💡 Peer perspectives with personal stories and strategies for living well with CP
📘 Practical guidance on self-advocacy, independent living, and navigating healthcare systems
📸 Photos and voices from our community, making the toolkit as warm and supportive as it is informative

💬 “As a physician scientist committed to the lifespan care of people with CP, this Toolkit is exactly what we've been waiting for. It's informative, comprehensive, and relatable. We have spent years trying to consolidate information like this for our families.” -Bhooma Aravamuthan, MD, DPhil

Don’t miss out on this essential resource for the CP community. Get your copy today ⬇️

🔗 https://cprn.org/the-adult-cerebral-palsy-tool-kit/

ID: Promotional graphic for the Adult Cerebral Palsy Toolkit, featuring the cover, a quote from Dr. Aravamuthan, and a banner highlighting that free resources are now available.

📺 Missed our webinar last night? Catch the replay on YouTube!We hosted a one-hour community gathering to brainstorm idea...
08/28/2025

📺 Missed our webinar last night? Catch the replay on YouTube!

We hosted a one-hour community gathering to brainstorm ideas for shaping the Cerebral Palsy Research Network’s 2026–2030 plan. 🙌

Your feedback guided our 2021–2025 strategy—leading to expanded research, new patient-centered tools, and more supportive educational resources. Now, your ideas will help us set the next stage of goals and priorities this fall. 💡

👉 Watch here:

On Wednesday, August 27, 2025, we hosted a one-hour virtual community gathering to brainstorm ideas to shape the direction of our work for 2026–2030. Your fe...

🎉 It’s HERE! 🎉The Adult Cerebral Palsy Toolkit is officially available now! 🙌✅ FREE digital download on our website✅ Pri...
08/27/2025

🎉 It’s HERE! 🎉

The Adult Cerebral Palsy Toolkit is officially available now! 🙌

✅ FREE digital download on our website
✅ Printed copy available for purchase on Amazon

This is the largest collaborative community resource we have ever developed, and it's for adults with CP! It's packed with important health and wellbeing information, practical insights and support from peers, and it offers many tools for living life as an adult with CP.

Thank you to our friends at Ipsen for helping make this toolkit possible, along with Cerebral Palsy Alliance Research Foundation, the Weinberg Family Cerebral Palsy Center, and our many generous community and anonymous donors.

Get your copy today! ⬇️
🔗 https://cprn.org/the-adult-cerebral-palsy-tool-kit/

ID: Promotional graphic for the Adult Cerebral Palsy Toolkit, featuring the cover, a quote from Duncan Wyeth, and a banner highlighting that free resources are now available.

🌟 It’s  ! 🌟This week, we want to hear your tips! 💬What encouraging or practical tips would you share with families and y...
08/26/2025

🌟 It’s ! 🌟

This week, we want to hear your tips! 💬

What encouraging or practical tips would you share with families and younger individuals living with cerebral palsy?

Your experiences can make a real difference for someone else in our community — whether it’s a daily routine hack, an uplifting piece of advice, or a resource you’ve found helpful.

Drop your tips in the comments ⬇️ and let’s build a stronger CP community together. 💚

ID: A graphic with a pink and cream background reads “Tip Tuesday – We Want to Hear From: YOU.” Below, it invites people to share experiences, advice, or resources that could help others in the community. The CPRN is at the bottom.

Understanding Your Child’s Gross Motor Function Classification (GMFCS): A Key to Tailored CareThe GMFCS is a five-level ...
08/22/2025

Understanding Your Child’s Gross Motor Function Classification (GMFCS): A Key to Tailored Care

The GMFCS is a five-level system that describes how a child with cerebral palsy moves in daily life. Knowing your child’s GMFCS level helps you and your healthcare team make informed decisions about interventions, equipment, and monitoring needs.

A recent survey revealed that 92% of caregivers prefer to know their child’s GMFCS level, yet fewer than half had this information. Additionally, 83% said it would be helpful to revisit this information over time.

Once you have your child’s GMFCS level, consider discussing:

• Frequency of hip surveillance, as 1 in 3 individuals with CP may develop hip displacement
• Appropriate mobility and assistive equipment to support development and independence

For more insights and to download a free CP toolkit, visit the full article here:

👉 https://cprn.org/the-gross-motor-classification-system-gmfcs/

🧠💪 Want to improve your health and well-being as an adult with CP?We’ve teamed up with the National Center on Health, Ph...
08/21/2025

🧠💪 Want to improve your health and well-being as an adult with CP?

We’ve teamed up with the National Center on Health, Physical Activity and Disability (NCHPAD) to offer the MENTOR program — Mindfulness, Exercise, Nutrition To Optimize Resilience for Adults. This FREE 8-week wellness program is designed to help adults with disabilities create lasting healthy habits. 🌿

Here’s what you can expect:

✅ Mindfulness - Focuses on mindfulness to give you a clear and focused outlook on your wellness journey, allowing you to continue to meet your wellness goals long after the program has ended.
✅ Exercise - Adapts to your exercise goals and needs, providing comprehensive classes and equipment.
✅ Nutrition - A registered dietitian will help you create a foundation in nutrition to better your health and be mindful about the foods you put in your body.
✅ Resilience - A holistic approach to resilience merges mental, physical and emotional health to optimize the way you live.

Once delivered exclusively in rehab centers, MENTOR is now available in a more accessible and flexible format to fit your lifestyle. As always, check with your healthcare provider before starting any new exercise or wellness routine.

🔗 Learn more about MENTOR: https://cprn.org/mentor-program/

🔗 Discover other wellness programs from NCHPAD: https://www.nchpad.org/nchpad-connect/

📣 We want YOUR voice in shaping the future of the CP Research Network!Join us for a special MyCP Webinar on Wednesday, A...
08/21/2025

📣 We want YOUR voice in shaping the future of the CP Research Network!

Join us for a special MyCP Webinar on Wednesday, August 27 at 8:00 PM ET 💻✨

This one-hour virtual gathering is your chance to:
✅ Hear highlights from our 2021–2025 strategic plan
✅ Join small-group conversations with peers and professionals
✅ Share your ideas to guide our 2026–2030 priorities

No prep needed—just bring your insights, experiences, and vision for the future. Together, we can build stronger research, better tools, and more supportive resources for the CP community. 💚

👩‍👩‍👦 Parents & caregivers
🧑‍🦽 Adults with CP
👩‍⚕️ Clinicians, researchers & educators

Everyone who cares about improving health and well-being for people with CP is welcome.

🔗 Register today to save your spot and get the Zoom link → https://cprn.org/portfolio-item/strategic-planning-2026-2030/

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