CARE & GIVING: Ed’s Story

CARE & GIVING: Ed's Story
Posted on Fri 17 Jun 2022

CARE & GIVING: Ed's Story*

Why I Give. . . .

CPARF’s mission is personal for us. We care about the newborns and young babies who’ve just gotten diagnosed. We’ve been in that position. And we are hopeful about the research they’re funding for adults of every age. CP keeps going, and that’s why we keep giving. – Ed C.  

Ed was stunned when doctors diagnosed his daughter, Jocelyn, with cerebral palsy in the 1980s. As a premature baby, Jocelyn had already been followed for eight months by a post-NICU clinic that never mentioned cerebral palsy as a possibility.

As they were driving home after the diagnosis, Ed asked his wife, Judy, “which telethon is for cerebral palsy?” There wasn’t a lot of information back then, and there wasn’t much research being done about how CP would affect children throughout their lives. 

During Jocelyn’s childhood, she endured multiple orthopedic surgeries and several sessions of physical and occupational therapy each week. Ed tried to make sure she could do everything other kids did. “Fortunately, I’m a big guy,” he said, “so putting her on my shoulders to go pumpkin picking, carrying her up a flight of stairs, lifting her by the bar in her spica cast after surgery, or getting into a ball pit at a birthday party was easy for me.”

Once Jocelyn started walking independently after surgery at four years old, Ed was “the big guy to lean on, to point out sidewalk issues, and to clear the path ahead.” He did this in every way, challenging her to find her strengths and be her best possible self.

Ed believes that every child with cerebral palsy should have access to early detection and early intervention. He also knows he’s one of millions of parents and caregivers who have children with CP, and that’s why he’s a proud, longtime supporter of Cerebral Palsy Alliance Research Foundation. It’s why he invests in the mission, and it’s why he participates in STEPtember  — CPARF’s flagship fundraising challenge — every year. (You can follow Ed’s lead and pre-register for STEPtember 2022 now.) 

By giving today, you’ll be clearing the path for people with cerebral palsy and supporting life-changing research and innovation to change what’s possible for Jocelyn and everyone with CP. 

*Ed's story is part of CARE & GIVING.This series covers a few different aspects of the cerebral palsy community. It features the experiences of those who care about and for people with cerebral palsy, including parents and caregivers, therapists, paraprofessionals, and other allies. It also highlights donors who have made it their mission to move cerebral palsy forward, because care and giving go hand in hand.

The CARE & GIVING blog is intended solely to raise awareness about the varied human experience with cerebral palsy and shouldn't be read or construed to contain any medical advice or medical endorsement by Cerebral Palsy Alliance Research Foundation. Only you and your doctor know what's best for you. Please consult your doctor for medical advice.

Check out part one of our Q&A with Michelle as she explores disability & thoelogy. Follow her on Instagram.