Cynthia Frisina Gray stooped to free her daughter Cathryn’s foot from the Velcro straps of an adaptive bike while Cathryn's big sister, Ally, 12, worked on loosening the other foot.
“It’s a group effort,” Frisina Gray said, lifting her younger daughter off the seat.
The Alpharetta mother found nothing similarly collaborative when she learned Cathryn, 10, had cerebral palsy at 11 months old. After a difficult pregnancy and an early delivery, Frisina Gray had a feeling the looseness in her baby’s body wasn’t normal, even though pediatricians assured her it was.
Cerebral palsy is caused by a brain injury that occurs sometime between pregnancy and age 3. The injury creates muscle problems that vary greatly. People with CP can have difficulty walking, talking and caring for themselves. Yet, the condition rarely affects intelligence.
“The neurologist diagnosed her with CP and didn’t give me any information," Frisina Gray said. "I went home and Googled it, and found nothing. The stuff I did find was horrible. There was nothing positive.”
Life changed quickly after the diagnosis. Summertime surgeries replaced family trips. Frisina Gray quit the marketing job she loved -- and the paycheck that was hard to live without -- to take care of Cathryn full time and master new skills required of her, like diaper-changing for incontinence, pain management, choking protocol, obtaining handicapped parking permits and finding the right fit for a school.
“I wanted to find a parent group because there are groups for everything you can think of, but there wasn’t a CP parent group at all," Frisina Gray said.
The family’s confusion only grew as a bevy of doctors were unable to agree on diagnoses, treatments and prognoses for Cathryn. An Atlanta orthopedic specialist eventually introduced Frisina Gray to another mom, Anna Marie Champion, whose daughter Morgan also had CP.
“We clicked right from the start because we’re both parents who were on a mission to find answers to questions that had not been asked,” said Champion of Cumming.
In 2004, the two moms founded Reaching for the Stars: A Foundation of Hope for Children with Cerebral Palsy, a nonprofit that supports federally funded CP research, with the hope of discovering prevention and a cure. RFTS has seven chapters around the country and 10,000 parents in its database. There is no staff and no one gets paid to work for RFTS.
"That's my office right there," said Frisina Gray, pointing to her laptop on an ottoman in her living room. It's the only national parent-run CP nonprofit. The group uses social media, e-mail newsletters and other marketing to draw attention, medical experts and celebrities to conferences and fundraisers. RFTS helped secure the resolutions that led to National Cerebral Palsy Awareness Day, which is March 25.
At a March 3 event at the Center for Disease Control and Prevention, author John Quinn and actor Ashton Kutcher’s twin brother, Michael, spoke about living with CP. Kutcher spent years denying he had the disability that mildly affected his speech and full function of his right hand.
“Society has shunned it so much," Kutcher said. "I was on a mission to live a normal life, so I didn’t want to talk about it. I had yet to accept that I had CP.”
Kutcher changed his mind and agreed to speak at a fundraiser to establish an RFTS chapter in Cedar Rapids, Iowa. Since then, he’s become something of a delegate for the foundation and is working with Frisina Gray on a memoir about his life.
In September, Kutcher, Champion and Frisina Gray lobbied for RFTS in Washington, meeting with Iowa Sen. Chuck Grassley about $10 million in research funds. RFTS's efforts previously had caught the attention of the CDC.
“We got a call at the CDC saying, ‘Do you know who these women are in Washington who are making this case for more research?' We didn't know who they were,” said Dr. Marshalyn Yeargin-Allsop, a medical epidemiologist and chief of the CDC's Developmental Disabilities Branch.
“We were impressed at how they mobilized so many people and were getting CP so much recognition while looking for a cure.”
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