When the Cystic Fibrosis Foundation was founded in 1955, parents of children with Cystic Fibrosis (CF) were told their children would not live long enough to attend elementary school. The situation has changed dramatically in 63 years, and A-1 Self Storage is proud to support the Cystic Fibrosis Foundation in their search for a cure.
“It really is incredible what has changed with Cystic Fibrosis research over the years,” said Audrey Walter, Development Director for the Central Texas Chapter of the Cystic Fibrosis Foundation. “Before there was any treatment, parents were told that their children wouldn’t live to 5 years old. Now, through all of the drug development and treatment options, life expectancy is up into the early 40s.”
Cystic Fibrosis is a relatively rare genetic disease, affecting about 30,000 patients in the United States, that impacts every aspect of a person’s life. The disease creates a buildup of mucus in the lungs, pancreas, and other organs, creating a myriad of health problems including respiratory illnesses such as bronchitis and pneumonia, liver disease, and a whole range of digestive issues.
In the 1950s, families afflicted with CF formed the Cystic Fibrosis Foundation to drive awareness, treat patients, and fund research toward finding a cure. In 63 years, and entirely through private donations, they have funded the research that directly led to the discovery of the CF gene, supported the development of nearly every medicine and treatment for CF, and established a network of accredited care centers across the nation to provide expert and compassionate care to patients and their families.
“The best care you can get if you have Cystic Fibrosis is to go to an accredited care center,” Audrey said.
To help pay for all of this incredible work, the Cystic Fibrosis Foundation and its local chapters work together with community organizers to hold events and collect donations.
“Our main goal is to fundraise for research and care for Cystic Fibrosis patients,” Audrey said.
One of the largest of these philanthropic events is the Great Strides Walk, established in 1989, in which participants walk to raise donations for the Cystic Fibrosis Foundation. Annually, there are more than 125,000 participants across the country at nearly 400 different events. At the time of this writing, the 2018 Great Strides Walk has generated over 36 million dollars in donations.
Stephanie Conner, of CX2 Construction, spoke with us about her participation in Great Strides Walk.
“My husband’s cousin, his two little girls have CF,” Stephanie said. “About the last 4 years now, we’ve done the annual walk and fundraising.”
When signing up for the walk, you can participate as an individual or as a member of a team. At that point, it’s time to start fundraising by asking family, friends, and anybody else to sponsor your participation. If you’re able to individually raise $500, you will be recognized as a Super Strider, and teams that raise at least $5,000 receive recognition as a Top Team.
“We set a goal on how much we want to raise, and reach out to all of our vendors to ask them to donate to the walk,” Stephanie remarked. “For the walk last year, my personal team raised over $27,000. It was a good year.”
While the main focus of the Great Strides Walk is to raise donations for the continued operation of the Cystic Fibrosis Foundation’s care centers, research, and advocacy efforts, the event has the added benefit of cultivating a community around those suffering from CF. Because CF is such a rare disease, many families coping with a diagnosis can feel like they’re struggling alone.
“The funny thing is, there are so many different people who work with our vendors who have family members or friends that have CF, and it's such a rare disease that you don’t really hear about it very often,” Stephanie said. “People come out of the woodwork at these different companies, like we had a guy say his granddaughter has it and he is thankful for what we’re doing.”
If you’re ready to take a step towards the cure of Cystic Fibrosis, you can find more information, including registered walkers and teams, on their website. We at A-1 Self Storage are thankful for the opportunity to help this amazing organization support Cystic Fibrosis patients and work towards the cure!