Dr. Laura Gilbert, a pediatric neurologist at St. Louis Children’s Hospital, has been selected to present our Dystonia in Cerebral Palsy patient-centered research agenda at the Child Neurology Society (CNS) meeting in Boston, MA in September 2021. Her talk, entitled, “Top 10 Areas of Research Need for People with Cerebral Palsy and Dystonia: A Novel…
How does your lived experience align with the initial results from our chronic pain study? Compiling information about the chronic pain and wellbeing challenges many adults with cerebral palsy experience, sometimes on a daily basis, is an important priority for the Cerebral Palsy Research Network as we work to improve health outcomes for our community….
The Cerebral Palsy Research Network’s progress as a Learning Health Network (LHN) has been published in the Journal for Pediatric Rehabilitation Medicine this past week. Primary author Amy Bailes, PT, PhD, published a self-assessment from leaders in the Cerebral Palsy Research Network using a tool developed by Cincinnati Children’s Hospital called the Network Maturity Grid…
Hospitals and clinicians in the Cerebral Palsy Research Network will be able to track, learn from, and compare outcomes for their patient populations thanks to our selection of standardized patient outcome measures. The CP Research Network has collaborated with Dr. Unni Narayanan, the subject of our recent CP Stories series, at the Hospital for Sick…
On Monday, June 21, at 8 pm ET, we invite you to tune in for our next MyCP Webinar, to discover why the Cerebral Palsy Research Network is working to become a learning health network and how doing so will enhance our efforts to improve health outcomes. The webinar will be presented by Amy Bailes…
In the third installment of her inspiring story, CP and triplet mom Carol Shrader shares how she watched her son Benjamin, who has spastic quadriplegia, flourish during his college years… The night before my son Benjamin began his freshman year, I could not sleep. I worried all night long. “I know, right?” my husband Wade…
[In the second installment of her moving three-part story, triplet and CP mom Carol Shrader describes her son Mason’s experience of finding independence as he left home for college for the very first time.] When you’re a mama bear who has raised four children with very different needs, it’s instinctive to be a helicopter parent….
We are excited to announce a new wellbeing program in partnership with Staying Driven and Steph “the Hammer” Roach! Beginning Tuesday, June 8th at 7 pm ET, Staying Driven coaches will offer virtual adaptive fitness classes exclusively to registered MyCP community members! Staying Driven is a virtual adaptive fitness program founded by Stephanie “the Hammer”…
The Cerebral Palsy Research Network will launch its new website – combining all four of its web properties – this Monday, May 24! Our extended community will benefit from this single rich repository of information, resources, research and collaborative tools. In order to learn how to maximize the benefits of our new site, it will…
Forty-five clinicians from 28 academic medical centers came together on Zoom last month for the Cerebral Palsy Research Network’s fourth annual investigator conference. The two-day online gathering featured keynote speaker Marc Randolph, the co-founder and first CEO of Netflix, who shared pearls of wisdom on decision-making and growth to our diverse audience of research leaders. Participants,…
