Cystic Fibrosis is a genetic condition that creates a sticky, thick mucus that affects mainly the lungs and pancreas, not to mention potentially other organs. Life expectancy in 1940 was below 5 years of age. In 2000, a person with CF didn’t make it to 30 years of age. Today, life expectancy is just over 37 years of age. My husband, Bryan lived until just shy of his 52nd birthday. In 1997, he underwent a double lung transplant.
The double lung transplant saved his life, but that’s not always the case with everyone with CF. It certainly didn't mark the end of his particular story as the gene was still in his body, of course, and still affected other organs. Not to mention, years of strong drugs wrecked havoc on his body. CF continued to be a daily struggle.
In 2016, approximately 30,000 people in the United States were reported to have Cystic Fibrosis. That’s 30,000 too many. Genetic research in general has advanced in leaps and bounds and continues to progress. Over a span of 75+ years, CF research, in particular, has successfully produced therapies in multiple phases that attack the disease.Given the success rate of therapy research, a cure cannot be too far behind. Cystic Fibrosis research must continue if more effective therapies and an ultimate cure is to be found.
Researchers are constantly finding out new things about Cystic Fibrosis and it’s so exciting to know that they continue to move forward one step at a time towards finding a cure. However, the clock is steadily ticking for all who are currently battling CF. Dealing with a growing number of friends who have CF and the exciting strides that have been made in research is what drives the intensity of my fund-raising efforts.
Need more convincing?
Get a sneak peek into the lives of families who deal with the ugly face of Cystic Fibrosis on a daily basis. Check out this short list of blogs: https://www.cff.org/CF-Community-Blog/Posts/2018/Top-10-Blog-Posts-of-2018/ Experience CF through the eyes of a child, a mother, a father, a brother, a sister, a wife, a husband, a friend. Humans are resilient. In the face of death, we fight. Bryan fought until the very end. And that will to fight and live life to the fullest is what reminds all of us of why we’re here. I’m here to contribute another small voice in a steadily-growing crowd of Cystic Fibrosis Advocacy.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.