A First Look at Cerebral Palsy Across the United States

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A First Look at Cerebral Palsy Across the United States

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A major milestone: This open-access study describes 9,756 people with cerebral palsy receiving care at 22 specialty sites across 17 states. Today, we are excited to share a major milestone for the Cerebral Palsy Research Network: the publication of our first study using data from the required and high-priority information collected in our clinical registry….

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Learning About CVI

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For CVI Awareness Month, Cerebral Palsy Research Newtwork community member Danielle Shealy shares her personal experience living with cerebral/cortical visual impairment and the strategies that help her navigate daily life. Cerebral/Cortical Visual Impairment (CVI) is a neurological condition that affects how children and adults process visual information. Unlike vision problems that originate in the eyes,…

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Celebrate With a Purpose. Advance Cerebral Palsy Research.

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This year, turn your celebration into an opportunity for friends and family to raise funds for CP Research Network September and October are two of the biggest birthday months of the year. As families and friends gather to celebrate another trip around the sun, many people are looking for meaningful ways to mark the occasion….

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MyCP Webinar: Progress and Possibilities in the Imaging Registry

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Brain imaging has long been a critical piece of understanding cerebral palsy, but translating MRI findings into meaningful clinical insights remains a challenge. Thanks to support from the Pediatric Epilepsy Research Foundation grant and collaboration across CP Research Network sites, the CP Research Network Imaging Registry is beginning to make that connection possible. Join us…

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What Does “Great CP Care” Look Like? A New Study Maps the Building Blocks

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What should high-quality cerebral palsy (CP) care look like, and how can healthcare programs ensure they are meeting the needs of people with CP and their families throughout life? A new study conducted through the Cerebral Palsy Research Network sought to answer these questions by examining 11 leading CP programs across North America. Researchers explored…

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Wellbeing with NCHPAD – and Why This Summer is the Perfect Time to Start

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If you’ve been curious about MENTOR but haven’t taken the plunge, this webinar is for you. MENTOR – Mindfulness, Exercise, Nutrition to Optimize Resilience – is a free, virtual 8-week wellbeing program from the National Center on Health, Physical Activity and Disability (NCHPAD) designed for adults with physical disabilities and chronic conditions. Through mindfulness, adaptive exercise,…

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Getting to the bottom of chronic pain in adults with CP: how understanding the experience of pain means more effective solutions

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On Tuesday, May 26, at 8 pm ET, the Cerebral Palsy Research Network will host a live MyCP community webinar about chronic pain in adults with CP. Pain is one of the most common and frustrating issues people with cerebral palsy report. It impacts the entire population from pediatrics through adulthood. There are different types…

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The CP Research Network Takes Action to Improve Pain Classification During Healthcare Visits

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The Cerebral Palsy Research Network investigators*, led by Drs. Amy Bailes and Mary Gannotti, have a newly published article about our efforts to improve pain assessment in adults with CP during their healthcare visits. The title of the article: First steps toward pain classification among adults with cerebral palsy: A modified Delphi Study was published…

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Building expert community partners in research: Unveiling our new CP research training hub

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If you are an adult living with cerebral palsy or a parent raising a child with CP, or a caregiver—this post is for you. Your voice doesn’t just belong in research. It belongs at the center of it. This week, the American Brain Coalition (ABC) launched its new Community Engagement Platform—a flexible training resource for…

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