 |
|
|
|
|
|
|
|
|
 |
|
|||||||
 |
 |
 |
 |
 |
 |
 |
 |
|
|
|||||||||||||||||||||||||||
Two Northside Women Are Bringing National Light to Cerebral Palsy Cynthia Frisina Gray of Alpharetta knew something was wrong with her daughter Cathryn. At 10 months, Cathryn, now 7, wasn’t doing the things other babies her age were supposed to be doing. But her pediatrician kept assuring her that Cathryn’s development was normal for a child born prematurely and that she would catch up. Trusting her instincts, Gray and her husband took Cathryn to a neurologist who immediately diagnosed cerebral palsy (CP). Meanwhile, in Alabama, Anna Marie Champion was following a similar path. Her twin daughters, Katelyn and Morgan, now 8, were also born prematurely. When Champion noticed Morgan’s gross motor skills weren’t in line with other babies, including Katelyn, her pediatrician explained the girls would always be three months behind the development schedule and that Morgan, too, would catch up. At 11 months, Champion and her husband requested a referral to a neurologist, who also immediately diagnosed Morgan with CP. While both mothers felt relief to know it wasn’t in their heads, they were devastated to learn their daughters would forever live with a neurological condition that has no cure. When they tried to find a support group to learn more about CP, they couldn’t find one. After a chance meeting at a specialist in Missouri, the only doctor with CP treating CP, the women decided to bring help to other mothers. They didn’t expect to become a nationwide voice for CP, garnering the support of the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH), and bringing awareness of a condition that affects 800,000 people. Parents in Need Referring to the brain (cerebral) and muscle weakness and poor control (palsy), CP is a group of chronic conditions that affects body movements and muscle coordination caused by brain damage that occurs during fetal development, birth or infancy. The damage creates short circuits in the brain’s ability to control movement and posture, leading to spasms and hindering a child’s ability to walk or grasp objects. Although the condition is not progressive, secondary conditions can get worse. With training, therapy and sometimes surgery, conditions may be less severe.
“While it affects motor skills, there are secondary complications such as bone deformities, increased risk of fractures, gastrointestinal problems and arthritis. Children with CP aren’t immune to all the things we would have with aging, but it’s just exasperated. Unfortunately, there aren’t even doctors who specialize in CP for adults. Once you’re 21, you are on your own,” Gray said. After discovering their daughters were just a tiny fraction of the number of people living with CP, they couldn’t believe support wasn’t just a phone call away. They formed Reaching For The Stars (RFTS) – so named because, as Gray said, “If you reach for the stars you are bound to get something.” The nonprofit, all-volunteer organization serves as a support group to other parents, providing factual information about CP as well as hope through its Web site and nationwide conferences. “When Cathryn was diagnosed, I, like any parent, went online to learn more about CP. What I discovered were horror stories that just frightened me,” Gray said. “Anna Marie and I were both so frustrated that there wasn’t a parent’s organization and we thought, ‘If we don’t do it, how long will it be before someone will? It might as well be us.’” Gray and Champion aren’t the only ladies devoted to RFTS – their four daughters are following in moms’ footsteps. While Morgan is the quiet and more reserved twin, she is the first to tell you that nothing is wrong with her. “I was just born this way,” she said. Seeking a national board of medical experts, both women were told medical professionals get asked to sit on boards constantly and are difficult to recruit. However, every doctor they approached immediately jumped on board. “It’s rare,” Champion said, “but everyone agreed the organization was much needed in the CP community.” “We’re national and the only organization out there,” Gray said. “Our overall mission is parent education, helping families know more about CP and that there is hope. All the clinical trials all over the country are listed on our Web site, as well as all the information that they can’t find anywhere else. We do parent conferences in Atlanta, Chicago, St. Louis, and we’re starting chapters all around the country.” Initially hosting one of its first parent conferences in Atlanta, the founders invited members of the CDC to attend. They did, and were so impressed they have since asked to participate in any activity RFTS organizes, even inviting the women to co-sponsor its first-ever CP awareness program. Getting Federal Support That fateful invitation extended to the CDC is also the reason that the organization has grown since its inception in 2004 to include advocacy and research. “The thing that is really shocking is if you look at all the diseases that the CDC covers, CP stands out like a red flag because it’s the only disorder that affects a great many Americans and doesn’t have funding. There are so many disorders that receive $10 million that affect just a few thousand people, whereas CP affects 800,000 people with no funding. Because of this, we’re asking the CDC to put out national surveillance like they do for autism, mental retardation and all the basic disabilities,” Gray said. In their efforts to bring awareness to parents, the duo are now hoping to educate Washington, D.C., about CP, taking their daughters and other families to meet with senators and legislators. Gray laughed when discussing the first of six visits to Washington. “The first time we testified we expected that we would walk in there and show them the number of people who have CP and the fact that there was no funding and they would se the discrepancy and say, ‘We must fix that.’ And we were surprised when it didn’t work that way.”
One believer in their cause is Vernon Jordan’s lobby firm, who took on RFTS as a pro bono case and now assists with lobby efforts. Considering CP research has never received federal funding, RFTS is happy to receive any support. In 2006, a meeting with Missouri Congresswoman Jo Ann Emerson and Viquar Ahmad, assistant to Ohio Congressman Ralph Regula, who is also chairman of the House subcommittee of Health and Human Services, led to an invitation to testify before the House subcommittee later that year. Since, the women urge other parents to become involved in advocacy by contacting lawmakers in hopes of receiving federal funding. Working tirelessly to bring more funding to CP research in hopes their own children will have a better future, RFTS has also branched into medical research. Just as they were surprised to discover a lack of funding, Gray and Champion were shocked that advances in CP have not changed in 50 years. Now that the organization has grown, they are moving their efforts toward research, becoming involved with an NIH grant, and leading fundraising efforts to provide more grants to doctors and researchers willing to study CP. In fact, RFTS will host its second annual benefit in Atlanta, with hopes of doubling the $40,000 it received last year. Inspiring Children Gray and Champion aren’t the only ladies devoted to RFTS – their four daughters are following in moms’ footsteps. While Morgan is the quiet and more reserved twin, she is the first to tell you that nothing is wrong with her. “I was just born this way,” she said, adding that her CP does not affect her life. “I like to play, read, dance and go horseback riding.” Morgan requires the help of a cane and has just welcomed an assistance golden retriever into her life, but still relies on her mother’s assistance when the other children decide to run upstairs to play. Katelyn admits she feels “sad” when she sees Morgan having trouble. Still, Morgan is tired of everyone asking her why she walks with a cane, which is why she wrote and is publishing her first book. Cathryn, an outgoing girl with a toothy grin, loves to read, draw, paint and dance, and recently had surgery to help correct her walk, and you can barely tell she walks with any limp. She admits to sometimes being jealous of her older sister Allie, who doesn’t have CP. Like Morgan, Cathryn gets tired of answering questions about her condition, so she wrote an essay for school, which received first prize. Last March, both Morgan and Cathryn stood before legislators in Washington to explain their limitations. Admittedly, RFTS was formed to help these two little girls – for what mother wouldn’t do anything possible? Its support and growth has led to the Champion family’s relocation to Cumming last fall. Both founders recently followed in the footsteps of Sen. Ted Kennedy when they were honored with the American Academy of Cerebral Palsy and Developmental Medicine’s (AACPDM) Cathleen Lyle Murray Award for their education, advocacy and research efforts. AACPDM’s 62nd annual meeting will be held in Atlanta in September, and of course RFTS will be co-sponsoring the event. If CP is the subject, expect to see Gray and Champion there. Now utilizing their pre-mom work skills as marketer and manager, respectively, Gray and Champion joke about the full-time commitment their organization has become. But when looking at the smiling faces of Cathryn and Morgan, it’s all worth it. PN Get Involved Join Reaching For The Stars Saturday, March 8, at its second annual “Reaching For The Stars Benefit.” Hosted at the Atlanta History Center, partygoers can dance the night away to the sounds of Atlanta Rhythm and Groove, enjoy a cocktail buffet and bid on extensive prizes in its silent auction. The organization also accepts donations and volunteers. Please visit www.reachingforthestars.org to learn more. For More Information
Reaching for the Stars |
 |
 |
 |
Reaching for the Stars
