What an extraordinary year! We sincerely hope all of you are staying healthy and safe during this difficult time.
For 18 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, postponed from May, will be 100% virtual and take place in October.
When our kids were diagnosed, 20 years ago, the life expectancy was 35 years old and the life people could live 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 the amazing work of the CF Foundation and our amazing supporters, life expectancy is now well into a person's 40's and more than 90% of people with CF have a drug, launched a little more than a year 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 with 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. But that's not all.incredible pharmaceutical research (funded by CF Foundation donations) have also developed lung clearance and mucous "busting" treatments (some being tested now as a possible treatment for COVID), specific inhaled anti-inflammatories and antibiotics designed to treat drug resistance bacterias, among any other avenues of treatment of CF.
Our kids are doing great. Derek, married to the amazing Rachel, is happy and healthy and working in Atlanta. Paige, our other CF'er, is entering her senior year of college is doing fantastic. Kyra, our middle one, graduated with her master from UNC last June, and her thesis was how to use technology to reduce the social isolation of CF people.
The last number of months 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 the last number of months have been devastating for many, including, I'm sure, some of you. If you can, and you choose to support CF as one of your charities of choice, we would be forever grateful.
Please stay healthy.and wear your masks! Mike, Allison, Derek, Rachel, Kyra and Paige
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.