Cerebral Palsy Research Network - CPRN

01/29/2026

💬 : We asked you: "What’s one small thing that makes a big difference in daily life with CP?"

You showed up with honest, thoughtful responses, sharing the tools, routines, and small acts of kindness that help make their everyday life a little easier.

At the Cerebral Palsy Research Network, your lived experience matters. When we listen to one another, we learn, we adapt, and we move forward together.

💚 Thank you to everyone who shared and continues to . Your voice helps strengthen our community and shape a better future for people with CP.

ID: Graphic with the question, “What’s one small thing that makes a big difference in daily life with CP?” alongside text thanking the community for sharing their experiences and voices.

01/28/2026

🌟 Community Spotlight 🌟

Meet John Borland, a member of our Community Action Committee and MyCP discussion moderator, whose gentle nature and wisdom serve as a grounding force for our CP community. His lived experience with cerebral palsy spans more than six decades, and he brings this experience and knowledge to our researchers. Diagnosed at age two, John has navigated multiple surgeries, evolving mobility needs, and the long-term impacts of CP.

After a 33-year career with the Pennsylvania Department of Environmental Protection and a life filled with travel, family, and outdoor adventures, John joined the CP Research Network's Adult Study Group to help ensure that medical research reflects the real experiences of adults with CP.

John's participation in designing CP research consistently reminds us why adult-focused CP research matters and how lived experience helps shape better care for generations to come. 💚

ID: A smiling older man with glasses is shown in a portrait photo alongside the text “Meet Our Team: John Borland.” The graphic highlights John’s involvement with the CP Research Network Adult Study Panel and his lived experience with cerebral palsy for more than 60 years.

01/28/2026

| Our Wellbeing Guide!

The CP Research Network wellbeing guide is a FREE digital resource for parents and caregivers who are raising a child, adolescent or young adult with cerebral palsy or another disability.

Head to our website to download our Guide and Toolkits, all FREE resources!

→ https://cprn.org/our-toolkits/

ID: Graphic reading “Tip Tuesday: The Wellbeing Guide” featuring a resource for parents and caregivers raising a child or young adult with cerebral palsy or another disability, alongside the CP Research Network logo.

01/23/2026

| Eating and drinking abilities can change over time when you have CP, but these subjects can be overlooked during routine healthcare visits. It's important to share with your healthcare team (i.e., your primary care physician) any changes you notice in eating, drinking, or swallowing so they can evaluate or refer you for evaluation of these abilities. There are a variety of strategies and interventions to support eating, drinking, and swallowing, so don't delay!

The Eating and Drinking Ability Classification System (EDACS) is a helpful way to get started discussing these important topics. Check out this brief community video developed in partnership with people who have CP and their family members:

🎥 Watch this short 2-minute community video to learn how EDACS can support discussions about eating, drinking, and swallowing: https://youtu.be/woa7TGbwb0Y?si=t80jDftNWBuQRQKy

Learn more about this subject (page 80) and other health topics in our Adult Toolkit: https://cprn.org/the-adult-cerebral-palsy-tool-kit/

Already a member of MyCP, our community portal? You already have access to all of our resources by visiting the CP Research Network's Toolkit page: https://cprn.org/our-toolkits/

Around 160,000 people in the UK, mostly adults, live with cerebral palsy (CP). Cerebral palsy is a lifelong condition which impacts abilities such as walking...

01/22/2026

🎥 Miss last night’s webinar? We’ve got you covered.

The recording is now live on YouTube! In this session, CP Research Network CEO and co-founder Paul Gross walks through the Network’s draft strategic priorities for 2026–2030, sharing what we heard during our community listening process and what’s ahead for CP research, care, and education.

▶️ Watch the full recording on YouTube and see what’s shaping the next chapter of this work.

Please enjoy the recording of our interactive webinar where we walked through the CP Research Network’s draft strategic priorities for 2026–2030. This sessio...

01/21/2026

📣 Still Time to Register for Our Webinar This Evening: Strategic Priorities Webinar

Join us Wednesday, January 21 at 8:00 pm ET for an interactive webinar as we share and discuss the CP Research Network’s draft strategic priorities for 2026–2030.
This session will highlight how we formulated our plan with our 2025 community listening process and outline what’s next for CP research, care, and education. CPRN CEO and co-founder Paul Gross will open with a brief overview of how community input shaped the draft five-year strategy.
Participants will then break into small Zoom discussion groups led by CPRN leaders to dive deeper into the Network’s four proposed strategic initiatives and share feedback on goals, priorities, and what success should look like.

💬 Your voice matters. Feedback from this webinar will directly inform the final strategic plan presented to the CPRN Board of Directors.

✔️ No preparation required
📅 Wednesday, January 21
⏰ 8:00 pm ET

https://cprn.org/what-we-heard-and-what-comes-next-for-cp-research/

📣 You’re Invited: CPRN Strategic Priorities Webinar

Join us Wednesday, January 21 at 8:00 pm ET for an interactive webinar as we share and discuss the CP Research Network’s draft strategic priorities for 2026–2030.

This session will highlight how we formulated our plan with our 2025 community listening process and outline what’s next for CP research, care, and education. CPRN CEO and co-founder Paul Gross will open with a brief overview of how community input shaped the draft five-year strategy.

Participants will then break into small Zoom discussion groups led by CPRN leaders to dive deeper into the Network’s four proposed strategic initiatives and share feedback on goals, priorities, and what success should look like.
💬 Your voice matters. Feedback from this webinar will directly inform the final strategic plan presented to the CPRN Board of Directors.

✔️ No preparation required
📅 Wednesday, January 21
⏰ 8:00 pm ET

🔗 https://cprn.org/what-we-heard-and-what-comes-next-for-cp-research/

01/21/2026

🌟 Community Action Committee Spotlight 🌟

Meet Manda Krpan Mesic, MPA, a dedicated advocate, policy expert, and caregiver with lived experience. Manda is the parent of three children, including a daughter with mixed dyskinetic cerebral palsy, and brings more than 20 years of experience in health policy, advocacy, and social programs across the U.S. and Canada.

As a member of our Community Action Committee (CAC), Manda contributes deep expertise in disability policy, family-centered care, and caregiver support. Through her work with leading research institutions and her commitment to elevating caregiver voices, she helps advance evidence-based research and meaningful change for families navigating complex health and social systems.

💚 Thank you, Manda, for your leadership, advocacy, and dedication to improving care and outcomes for the CP community.

ID: Headshot of Manda Krpan Mesic, MPA, smiling in a green top. The image highlights her role as a caregiver and policy advocate and features the CP Research Network logo.

01/19/2026

📣 You’re Invited: CPRN Strategic Priorities Webinar

Join us Wednesday, January 21 at 8:00 pm ET for an interactive webinar as we share and discuss the CP Research Network’s draft strategic priorities for 2026–2030.

This session will highlight how we formulated our plan with our 2025 community listening process and outline what’s next for CP research, care, and education. CPRN CEO and co-founder Paul Gross will open with a brief overview of how community input shaped the draft five-year strategy.

Participants will then break into small Zoom discussion groups led by CPRN leaders to dive deeper into the Network’s four proposed strategic initiatives and share feedback on goals, priorities, and what success should look like.
💬 Your voice matters. Feedback from this webinar will directly inform the final strategic plan presented to the CPRN Board of Directors.

✔️ No preparation required
📅 Wednesday, January 21
⏰ 8:00 pm ET

🔗 https://cprn.org/what-we-heard-and-what-comes-next-for-cp-research/

01/16/2026

At the Cerebral Palsy Research Network, we’re changing how people with CP are treated and cared for across their entire lives, not just in childhood. We now have a CP patient registry with over 20,000 people with CP, making it the largest in the world! As our registry grows, so does our understanding of how to improve the care and treatment of people with CP. Our goal is simple but powerful: to meaningfully move the needle on what health and well-being can look like for every person with CP.

We collaborate closely with partners to maximize impact, stretch resources, and work as efficiently as possible. We may be small, but we are mighty, driven by passion, expertise, and lived experience.

Your support matters now more than ever. If you feel inspired, please consider making a donation today and explore a few quick facts in the graphic below.

💚 Donate here: https://cprn.org/donate/

Together, we can keep moving research, care, and community forward.

01/15/2026

💬 Question:

What’s one common assumption about living with cerebral palsy that doesn’t match your reality?

Whether it’s something people get wrong about your abilities, needs, or daily life, let us know in the comments below. Your experience can help reshape how others understand CP.

ID: A young athlete with cerebral palsy plays floor hockey in an indoor arena, captured mid-motion.

01/13/2026

Did you know we host monthly webinars about current CP research being conducted through the Network? 🎥💡 From dystonia, to ableism in healthcare, adult priorities to AI in CP, we have you covered!

Sign up today to be notified about upcoming sessions so you never miss out! If you couldn't attend a past webinar, no worries—you can catch up anytime in our YouTube library.

Head to our YouTube page to learn more!

ID: A pink background with the words Tip Tuesday on it and Monthly Webinar. There is a picture of a computer with CPRN's YouTube page on it. See less

01/12/2026

Starting the New Year off right means investing in a better future for people with cerebral palsy.

“This nonprofit has supported my family’s journey with CP in so many ways throughout my son’s life. From helping sort out interventions to offering a glimpse into his future through the Adult CP Toolkit, I couldn’t be more grateful.” — E. Sanders

As we step into the New Year, your support makes stories like this possible. Your gift fuels the research registry, advances clinical care through our Learning Health Network, expands trusted resources like the CP Toolkit, and strengthens community programs that support people with CP across the lifespan.

💚 Make a tax-deductible gift today to the Cerebral Palsy Research Network and help ensure people with cerebral palsy have access to better care, clearer guidance, and stronger outcomes.

🔗 Donate today: https://cprn.org/donate/