After taking a year off due to COVID, We are Back!
For 20 years, we have been raising money for a cause very important to us. Two of our three kids have Cystic Fibrosis, a genetic disease affecting 30,000 Americans. This disease has degenerative, devastating impacts on the lungs, digestive system and other parts of the body. We have, through the incredibly generous support of our family, friends and professional network, raised hundreds of thousands of dollars for our annual Great Strides Walk. This year's walk will take place in May.
When our kids were diagnosed, 22 years ago, the life expectancy was 32 years old. The quality of life for people with CF was one of constant hospitalizations, untold time doing breathing treatments and the prospects of having any kind of "normal" life were pretty bleak. Because of our amazing supporters and people like you, the funds raised for the CF Foundation has funded research advances, pharmaceutical partnerships that have developed life altering drugs and the life expectancy for someone diagnosed now is almost 50 years old. More than 90% of people with CF have a drug, launched a little more than 3 years ago after the fastest FDA approval in history, that treats the underlying cellular defects associated with CF. The results have been incredible - lung functions improving by 30-40 percent points, digestive issues being either eased or completely eliminated and simple things, like a CF person having a child without the need for IVF are now possible. While Trikafta is having amazing results, we are not done. It only treats the cause, it is not a cure. It does not help 10% of the CF population with "nonsense mutations", more rare genetic mutations. It also has the prospect of moving CF from a fatal disease to a long term chronic disease; a great development but not the answer to our prayers.
Our kids are doing great. Derek, married to the amazing Rachel, is happy and healthy and working in Atlanta. Paige, our other CF'er, graduated from College almost a year ago and working in Jacksonville. While they are healthy and live a full life, we need to stay vigilant to continue to fund research for a cure for them, and for all with CF.
The last two years have been difficult for all of us. But imagine that you need to live your life like that all the time. You need to constantly be concerned about catching a devastating virus or bacteria. You need to stay 6 feet from all people like you for fear of catching something you could never recover from. You could be healthy one day, and incredible ill the next. You need to wear a mask during flu season all the time to protect yourself and others. That is what life with CF is like…..every day.
We know that you have a lot of choices when it comes to charitable causes to support. We would be honored and grateful if CF would be one of them.
Thank you for considering supporting all of us who fight for CF everyday,
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.