A grassroots movement to raise money in search of a cure for cystic fibrosis was started in Great Falls last year when several members of the community learned that a vivacious young girl at Great Falls Elementary was afflicted with the disease. The CF walk, the first in Great Falls, raised over $60,000 for research.
This year members of the community will walk on Sunday, May 16, in Great Falls to raise additional funds during the Great Strides walk. The effort is spearheaded by Stacey Wood, whose daughter Rachel was born with CF. “This is the first year in a long time where there’s more research than funding available,” said Stacey Wood. “With cystic fibrosis, because it’s not a big disease, they have become creative with their own funds. Because only around 30,000 people are affected, the big drug companies have no financial incentive to do research.”
Last year roughly 200 people participated in the walk. “This year is going to be much bigger,” said Stacey Wood. The group is looking to raise $100,000 during the walk this year.
Rachel Wood, excited about the prospect of raising money for a cure, said, “They get the money and give it to these scientists to try to cure cystic fibrosis.” She urges members of the community to come out for the walk or to donate money to other walkers because “if you did, it would be important to me and other people because it would help me and other people get rid of the disease.”
Rachel Wood is a typical little 8-year-old girl who doesn’t outwardly show any signs of the disease that she battles daily. She plays a variety of sports and actively participates in her school. But she lives with CF, meaning she suffers from chronic and potentially fatal lung infections and has difficulty digesting food. Rachel’s daily routine includes a 40-minute treatment plan on a mucous dislodging machine in the morning and at night, along with an assortment of medications to assist in her digestion as well as to keep life-threatening infections at bay.
“She doesn’t know any other life. She’s great. She just does the treatment and accepts it,” said Stacey Wood.
The average life expectancy for a person with CF is 32. Though that number seems low, it is a marked improvement made possible by research over the last few decades. Just 20 years ago, a person with CF had a life expectancy of 18 years.
“They’ve made phenomenal progress. But, as a mother, it can’t be fast enough,” said Stacey Wood. “Childhood first and disease second. That’s how we live our life. I want Rachel to have the best life she can.”
Jennifer Follin has been actively helping to raise money for CF research since learning that Rachel was living with the disease. “I just couldn’t believe it when I found out Rachel had cystic fibrosis. You would never know. We all felt we had to do something to raise money for research because they are so close to a cure,” said Follin.
One of the ways friends of the Wood family have helped raise money is through in-home fund-raisers. “People have been great. They are hosting parties at their house and bearing all the cost for it and giving all the money they raise that night to CF research,” said Stacey Wood. Just last week, a “Ladies Night Out” party hosted by a friend of the Wood’s raised over $3,000.
“To walk, you don’t have to raise a certain set amount of money,” said Follin. Anyone with an interest can participate. Those wishing to raise funds can get additional information online at www.cff.org.
“I would like people to know that research takes dollars, and every dollar that’s raised for CF, 90 cents of that dollar goes to research. That’s a pretty good investment,” said Stacey Wood.
CF can strike any family. For example, Rachel has a twin brother, who is free of the disease. CF is passed on through a defective gene. According to the Cystic Fibrosis Foundation, one in 31 Americans is a carrier of the defective gene. Each time two carriers conceive a child, there is a 25 percent chance the child will have CF. “You can’t catch it, you have to be born with it,” explains Rachel Wood.
These days prenatal screening routinely includes a search for the CF gene. In 1989 the defective CF gene was discovered by scientists and has allowed research into finding a cure for CF to accelerate. New drugs and drug combinations are on the horizon, if research money can be found.