Hello family and friends!
I hope you are all doing well!
I want to start by extending my sincerest gratitude for all your support of my fundraising efforts over the past 10(!) years. Your contributions have made in incredible difference in the lives of those with CF by funding breakthrough research and improvements in clinical care. In the past few years alone, two new CFTR modulator drugs have been approved by the FDA. These are drugs that treat the underlying cause of Cystic Fibrosis at the cellular level. Treatments like these have increased the life expectancy for those with CF.
Based on recent data CF Patient Registry data, the life expectancy of people with CF who are born between 2018 and 2022 is predicted to be 56 years!
I was fortunate enough to personally enroll patients in clinical trials for these new drugs, and I can tell you that they are truly life changing treatments for our patients.
Although we have made great strides these past few years, we still have a long way to go. Many individuals with CF continue to be lost far too young, and living with CF still requires hours of treatment each day just to breathe.
Several other new treatments are currently in development including mRNA and Gene Therapy technologies that may eventually lead us to a one-time cure for this disease, but in order to get there, we continue to need your help.
Please consider making a donation this year, and together we can help CF stand for "Cure Found"! Donating is easy and secure. Simply follow the prompts to make a donation. Any amount that you can contribute is greatly appreciated.
To learn more about this devastating disease and the impact of the CF Foundation, please visit https://www.cff.org or visit the links below:
CF Clinical Trials: https://youtu.be/OEnDZ2WRhXM
CFTR Modulators: https://youtu.be/q_yBKyvSqE4
CF Genetic Therapies: https://www.cff.org/research-clinical-trials/research-genetic-therapies
Thank you for supporting me and my Great Strides team! Together we can make a difference and add tomorrows to the lives of people with cystic fibrosis.
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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.