In early 1998, a teenager with cystic fibrosis from Florida posed a question to a CF community email listserv, “Why is there no national cystic fibrosis awareness day?”
Dozens of community members from around the world, including Australia, Canada, and South Africa, expressed their agreement but didn’t know how to get started. From there, a volunteer group was formed in the United States consisting of individuals with CF, family, and friends dedicated to getting national recognition for cystic fibrosis.
One of the founding members was Lenora Degen, a mother to a child with cystic fibrosis, and a resident of Colorado. Together, she and hundreds of community members wrote letters to former President Bill Clinton to ask for a national recognition day. While their efforts were unsuccessful, the group was undeterred.
They reached out to Congress and secured the support of Senator Ben Nighthorse Campbell (R-Colo.) who embraced the idea. Collectively, they gained the support of additional members of Congress from more than 30 states, and a special recognition week for cystic fibrosis was designated for the first time from October 10-16, 1999, through a Senate resolution.
“We were elated!” said Lenora about the milestone. “The process had been more difficult than we thought it would be. At the time, it felt like there were awareness months for everything, and when you’re part of the CF family, you realize how important something like this is.”
To celebrate the first national recognition of cystic fibrosis, the community went all out. Pins with purple ribbons and red roses were sold to represent the 65 Roses Story, people made T-shirts, and fabric roses with index cards about CF were distributed to help raise awareness.
“Ultimately, I’m glad it wasn’t as easy to create a national recognition day as we thought it would be,” Lenora added. “This brought the CF community together in a way we hadn’t before. If it had been easy, I don’t think it would have been so memorable.”
In the years that followed, Senate resolutions placed cystic fibrosis in the national spotlight through increased public awareness. In 2006, the U.S. Senate and House of Representatives passed House Concurrent Resolution 357, recognizing May as National Cystic Fibrosis Awareness Month. The campaign was then extended to a month-long event held in conjunction with Great Strides, the CF Foundation’s largest national fundraiser.
More than 25 years later, we are proud to celebrate the CF community every May. However, there are more opportunities to raise awareness year-round — whether you want to share your story, connect with community members, advocate, or something else — you are encouraged to get involved.
