Cerebral Palsy Research Network - CPRN

12/15/2025

Reminder: Join us for our upcoming webinar, tomorrow, December 16th!

📣 Upcoming Webinar!

Join the Cerebral Palsy Research Network on December 16 at 8 pm ET for a deep dive into the brand-new Adult CP Toolkit — the first comprehensive, evidence-based health resource created specifically for adults living with CP.

Hear from CP Research Network leaders Michele Shusterman, Dr. Mary Gannotti, Dr. Jensiné Clark, and Dr. Cristina Sarmiento as they share how this 150-page guide came together, why it matters, and how it’s already empowering adults with CP across the country.

📘 Register for the Webinar: https://cprn.org/mycp-webinar-inside-the-making-of-the-first-adult-cp-toolkit/

📣 Upcoming Webinar!

Join the Cerebral Palsy Research Network on December 16 at 8 pm ET for a deep dive into the brand-new Adult CP Toolkit — the first comprehensive, evidence-based health resource created specifically for adults living with CP.

Hear from CP Research Network leaders Michele Shusterman, Dr. Mary Gannotti, Dr. Jensiné Clark, and Dr. Cristina Sarmiento as they share how this 150-page guide came together, why it matters, and how it’s already empowering adults with CP across the country.

📘 Register for the Webinar: https://cprn.org/mycp-webinar-inside-the-making-of-the-first-adult-cp-toolkit/

ID: A promotional graphic for a CP Research Network webinar. The top left features a bright green and pink “LIVE WEBINAR” badge. To the right is the cover of the Adult CP Toolkit: Navigating Life with Cerebral Palsy. The main text reads: Inside the Making of the First Adult CP Toolkit. Below is a brief description about the upcoming webinar and its speakers. At the bottom, the date and time are listed: Tuesday, December 16th — 8PM ET | 5PM PT, along with the CP Research Network logo.

12/12/2025

Join the movement, wear the cause! 💚

Shop our exclusive merch today and spread cerebral palsy awareness with style 👉https://cprn.myspreadshop.com/all

ID: Graphic promoting CP Research Network merchandise, featuring a hoodie, long-sleeve shirt, mug, and hat with the CPRN logo and “10 Years” branding, alongside the text “Shop Our Merch” and “Support CP Research.”

12/11/2025

📣 Upcoming Webinar!

Join the Cerebral Palsy Research Network on December 16 at 8 pm ET for a deep dive into the brand-new Adult CP Toolkit — the first comprehensive, evidence-based health resource created specifically for adults living with CP.

Hear from CP Research Network leaders Michele Shusterman, Dr. Mary Gannotti, Dr. Jensiné Clark, and Dr. Cristina Sarmiento as they share how this 150-page guide came together, why it matters, and how it’s already empowering adults with CP across the country.

📘 Register for the Webinar: https://cprn.org/mycp-webinar-inside-the-making-of-the-first-adult-cp-toolkit/

ID: A promotional graphic for a CP Research Network webinar. The top left features a bright green and pink “LIVE WEBINAR” badge. To the right is the cover of the Adult CP Toolkit: Navigating Life with Cerebral Palsy. The main text reads: Inside the Making of the First Adult CP Toolkit. Below is a brief description about the upcoming webinar and its speakers. At the bottom, the date and time are listed: Tuesday, December 16th — 8PM ET | 5PM PT, along with the CP Research Network logo.

12/09/2025

💚 : Preventing Falls with Cerebral Palsy

Falls are common for people with cerebral palsy — more than half of adults with CP who walk experience a fall each year. But there are stragies to help prevent falls!

✅ Tips to Help Prevent Falls:
• Track your falls: Keeping notes can help identify patterns and prevent future falls.
• Build strength & balance: Physical therapy and targeted exercises can improve stability.
• Modify your environment: Remove tripping hazards and make your space safer.
• Address the emotional side: Fear of falling can hold you back — support and education can rebuild confidence.

💡 Research from the Cerebral Palsy Research Network found that 86% of people with CP experience at least one fall per year, often on uneven surfaces or when tired. Proactive prevention can make a big difference!

📘 Learn more in our Adult Cerebral Palsy Toolkit: cprn.org/adult-cerebral-palsy-toolkit

ID: A Tip Tuesday graphic titled “Preventing Falls” lists tips on tracking falls, building strength and balance, addressing the emotional side, and removing hazards. The CP Research Network logo appears at the bottom.

12/05/2025

💬 Question of the Week

Accessibility can make all the difference in how we experience and move through our communities.

What kinds of spaces or designs make you or your family member with CP feel most at ease at home and in public spaces? We will get you started by sharing the perspective of one of our team members: Extra wide doorways!

ID: A green gradient background with a white rounded box in the center. At the top of the box is the Cerebral Palsy Research Network ribbon logo. Below it, the text reads: “Join In – What kinds of spaces or designs make you or your family member with CP feel most at ease at home and out in public spaces?”

12/04/2025

🌟 Community Spotlight: Betsy Pilon 🌟

We’re proud to highlight Betsy Pilon, a dedicated member of our Community Action Committee and the Executive Director of Hope for HIE Support (Hypoxic Ischemic Encephalopathy) Parent Hub — the leading global nonprofit advocating for children and families impacted by Hypoxic Ischemic Encephalopathy (HIE). 💚

After her son, Max, was born with HIE in 2012, Betsy turned her family’s experience into action—helping build a global network that now connects more than 9,000 families, clinicians, and researchers through education, advocacy, and support.

Recognized by Facebook in 2019 as one of the top community leaders on the platform, Betsy continues to amplify the voices of families through her work with Hope for HIE, the Newborn Brain Society, and numerous neonatal and neurology initiatives. Her leadership and collaborative spirit embody the power of lived experience and the impact of community-driven advocacy.

Thank you, Betsy, for your tireless commitment to supporting families of children with HIE and CP. 💚

ID: A graphic titled “Meet Our Team” features a headshot of Betsy Pilon smiling, wearing a red blazer. Her bio appears below, noting she is the Executive Director of Hope for HIE and an advocate supporting families affected by Hypoxic Ischemic Encephalopathy. The CP Research Network logo and a “10 Years of Partnership in Research” banner appear at the bottom.

12/03/2025

We were deeply saddened to learn of the passing of disability rights activist, author, and community leader Alice Wong.

Alice dedicated her life to advancing disability justice, amplifying disabled voices, and creating spaces where people could share their stories and shape cultural understanding. As the founder and director of the Disability Visibility Project, her work transformed how disability is represented, recorded, and valued through personal sharing and storytelling.

Alice’s impact also extended through her powerful writing and leadership. She received a BA from Indiana University and an MS from the University of California, San Francisco. Her essays appeared in The New York Times, KQED, YES! Magazine, and other publications. She served on the National Council on Disability from 2013 to 2015, and was a columnist for Teen Vogue, always using her platform to champion equity, access, and community power.

Friends and family described her as a brilliant writer, a powerful organizer, and a fierce luminary whose influence will continue to shape the disability community for generations. In her memoir Year of the Tiger, Alice wrote: “The real gift any person can give is a web of connective tissue. If we love fiercely, our ancestors live among and speak to us through these incandescent filaments glowing from the warmth of memories.”

Today we honor her voice, her courage, and her extraordinary legacy.
Our thoughts are with her family, friends, and everyone who was inspired by her work.

Read more about her life, impact, and legacy in the article below.

The MacArthur "Genius" Award-winner was best known as the founder of the Disability Visibility Project, which highlights disabled people and disability culture through storytelling projects, social media and other channels.

12/02/2025

is here!

Today we invite you to support the Cerebral Palsy Research Network. 💚 Your generosity helps us strengthen our research and registry programs, improve care and treatment for CP, and support families and individuals through every stage of life with CP by providing empowering educational resources.

Our mission is simple: To optimize lifelong health and wellness for people with cerebral palsy and their families.

If you’re able, please consider donating today. Every gift makes a difference.

12/02/2025

is here!

Today we invite you to support the Cerebral Palsy Research Network. 💚 Your generosity helps us strengthen our research and registry programs, improve care and treatment for CP, and support families and individuals through every stage of life with CP by providing empowering educational resources.

Our mission is simple: To optimize lifelong health and wellness for people with cerebral palsy and their families.

If you’re able, please consider donating today. Every gift makes a difference.

👉 https://cprn.org/donate/

12/01/2025

💚 Support the Cerebral Palsy Research Network this giving season

The CP Research Network is changing lives! From improving healthcare experiences to deepening the understanding of cerebral palsy across the lifespan, we are redefining what wellbeing can mean for people with CP. Your support helps make this work possible.

Here is how we are doing it:

✨ Our community works with scientists through the entire research process! We gather our power as a community to move forward the most impactful studies for CP.

🌿 Our network of 35 hospitals collects data about the care and treatment of people with CP. We want to understand what is working and what needs to change.

💚 The founders of the organization are parents. Our leaders have real world experience with CP, and they bring those experiences to everything they do.

🗣️ You share your experiences with us! We have surveys and a discussion space for you to share your experiences with CP to guide research. Join us: https://cprn.org/login/

🔬 Stronger research, faster breakthroughs! We provide the support and tools that allow researchers to design the most competitive studies to keep earning funding.

📈 A learning health network supports a culture of learning and keeps improving healthcare practices so people with CP will improve wellbeing and can live their best life.

📣 We share what we learn directly with you! We pass on our findings to families and healthcare providers through webinars, toolkits, blogs, our website and through publications.

💚 Your donation helps move this important work forward.
Support CP research and help create a stronger future for people with CP.

→ https://cprn.org/donate/

A set of green and cream graphics titled “The CP Research Network is Changing Lives,” highlighting key parts of the network’s work, including research partnerships, hospital data collection, parent-led leadership, community input, stronger research tools, and shared findings. The final slide includes contact information.

11/28/2025

💚 Support the Cerebral Palsy Research Network this giving season

The CP Research Network is changing lives! From improving healthcare experiences to deepening the understanding of cerebral palsy across the lifespan, we are redefining what wellbeing can mean for people with CP. Your support helps make this work possible.

Here is how we are doing it:

✨ Our community works with scientists through the entire research process! We gather our power as a community to move forward the most impactful studies for CP.
🌿 Our network of 35 hospitals collects data about the care and treatment of people with CP. We want to understand what is working and what needs to change.
💚 The founders of the organization are parents. Our leaders have real world experience with CP, and they bring those experiences to everything they do.
🗣️ You share your experiences with us! We have surveys and a discussion space for you to share your experiences with CP to guide research. Join us: https://cprn.org/login/
🔬 Stronger research, faster breakthroughs! We provide the support and tools that allow researchers to design the most competitive studies to keep earning funding.
📈 A learning health network supports a culture of learning and keeps improving healthcare practices so people with CP will improve wellbeing and can live their best life.
📣 We share what we learn directly with you! We pass on our findings to families and healthcare providers through webinars, toolkits, blogs, our website and through publications.

💚 Your donation helps move this important work forward.
Support CP research and help create a stronger future for people with CP.

→ https://cprn.org/donate/

A set of green and cream graphics titled “The CP Research Network is Changing Lives,” highlighting key parts of the network’s work, including research partnerships, hospital data collection, parent-led leadership, community input, stronger research tools, and shared findings. The final slide includes contact information.

11/27/2025

Today, we give thanks for the incredible families, clinicians, and researchers who make our community so strong. Your collaboration, compassion, and commitment continue to drive progress and hope for people living with cerebral palsy. 💚

Wishing you a day filled with warmth, connection, and gratitude.🙏🏻