By Christina Stock
Roswell Daily Record
On Easter weekend, the organizers of Great Strides are hoping for a big turnout for its 5K walk that starts at Cahoon Park.
Great Strides provides an opportunity for people within the community to get involved in a great cause, helping people who suffer from a genetic mutation that thickens the mucus and shortens their lifespan.
According to the Cystic Fibrosis Foundation Patient Registry, more than 30,000 people are living with cystic fibrosis, more than 70,000 worldwide. Approximately 1,000 new cases of CF are diagnosed each year. More than 75 percent of people with CF are diagnosed by age 2. An additional 10 million more — or about one in every 31 Americans — are carriers of the defective CF gene, but do not have the disease.
Susan Curry has been part of the Great Strides for the Cystic Fibrosis Foundation for more than 15 years in Roswell. She has three daughters who have CF, ages 16, 23 and 29. “The median age of survival when my oldest daughter was born was 18 years,” Curry said. “It is now up to 40. I’ve met people who are in their 50s and 60s. They’ve made amazing advances in research. The Cystic Fibrosis Foundation started by parents of kids with CF and they are one of the charities where 90 percent of the money you donate goes directly to research. They don’t do a lot of fru-fru stuff.”
Curry’s case is a rare one since all three daughters have the genetic mutation. “The odds of having CF in your kids when the parents are both carriers is only 1 in 4,” she said.
“My kids were part of a clinical trial recently for a new drug that treats the underlying cause of CF instead of just the symptoms. They started the trial three years ago. Now the drug is on the market. It is not a cure but it treats the defect instead of just the symptoms. My oldest daughter got the most benefit from it. It made her feel a lot better. She still has problems doing a lot of stuff, but it made quite a difference in her health.”
The grandchild of Esabel Thurman was diagnosed with CF when he was 6 weeks old. “My little grandchild was tested,” Thurman said. “He is now 3 years old.
“I have another daughter and they just tested her. There is a test while you are carrying the child.”
Thurman is active in fundraising and organizing for Great Strides. “She has been helping me the last two years,” Curry said.
Thurman recently had two fundraisers involving local fitness clubs. “I am a member at Elite Fitness and Tanning,” Thurman said. “Sean Schooley has always been gracious about opening his doors for Saturday fundraisers to raise awareness. All the funds go to the Cystic Fibrosis Fundraiser. The Zumba instructor, Julie Heinds, dedicated her time this year, as did two other instructors.
The other event was at Fitness for 10 for the first time on Friday. “We appreciate the owners Norma and Toby Busch, their Zumba trainer, Nancy Leos and Mixed Fit trainer Kynda Valencia,” Thurman said.
“It was just me and a few of my friends and family when we started the walk,” Curry said. “Maybe 25 of us. With all of them joining, we are getting bigger.”
“My family and all the other families who fight this battle, who have lost family members, we appreciate any and all donations and help and support that we get,” Thurman said. “It is not federally funded and all donations go into the research. I am hoping that my little 3-year-old grandson will have a cure within his lifetime.”
Participants in the walk can form teams at their workplace, through their clubs and organizations, or with friends and family.
Cash donations should be in the form of a money order or check before mailing or bringing to the event.
Check-in starts April 15 at 8 a.m. at the Cahoon Park Pool. The walk starts at 9 a.m. and heads to the Enchanted Lands Park and back. There will be giveaways and refreshments provided. Participants who donate at least $100 will get a T-shirt. All Great Strides events are non-smoking.
To sign up or for more information, visit cff.org/greatstrides.
Christina Stock may be contacted at 575-622-7710, ext. 309, or at email@example.com.