My Great Strides Story
Our Emily was diagnosed with Cystic Fibrosis (CF) at nine-months of age and our lives were greatly impacted by the diagnosis. 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs.
When Bob and I were in Medical and Nursing school in the 1980's, the average life expectancy of someone with CF was late teens. We quickly learned that because of the CF Foundations commitment to finding a cure through ongoing research, her life expectancy was increased to 31 in 2000, when she was born. Our family has been involved with the CFF since 2001 when we learned of her diagnosis, and continue to be committed to helping raise funds for ongoing research for development of treatments and therapies for those affected with CF.
Emily is currently a senior at Utah State University and is a thriving 23 year old who truly loves spending time with her family, especially her nieces and nephews. She was married last October and is currently on the fairly new medication Trikafta, which was developed through partial funding from the CFF. Although there are still a few side effects from Trikafta, Emily's health has significantly improved over the past four years while on the medication.
Even though the median age expectancy for people with CF has recently risen to 56, many people with CF still do not benefit from existing therapies. Our vision along with the rest of the CF community is a cure for every person with cystic fibrosis – a life free from the burden of this disease – and we will not leave anyone behind.
Please support me!
By supporting my fundraising goals either through the Great Strides Walk or The Extreme Hike, you have an opportunity in your lifetime to be part of ending this disease. Please consider joining us and help make medical history.
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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.