Our Great Strides Story
Please support our efforts to find a cure for cystic fibrosis!
In early 2020, just as the "corona virus" was making headlines across the world, Chris and I got the devastating news that our unborn daughter had a 25% chance of inheriting a cruel and incurable disease. Allison's CF diagnosis was confirmed less than 3 weeks after she was born that August.
While those with CF may "look healthy", there is a battle raging inside the body which demands constant effort to prevent the disease from taking over. Hours of breathing treatments, hundreds of pills, and a constant risk of lung infections which can lead to hospitalizations, are now a regular part of our reality.
I never thought it would happen to us. And surely not a second time. But when our son Colin was born in 2023, I knew immediately when I held him that he had inherited the same genes we had passed to Allie. His diagnosis was confirmed 10 days later.
Thankfully, the Cystic Fibrosis Foundation has had immense success pioneering its venture philanthropy model. In the 1950's, CF children were not likely to live long enough to make it to Kindergarten. Now, due to the efforts of the CF Foundation, half of those born with CF are expected to live until their mid 50's. While we celebrate these advances and the efforts of those before us, we will not be satisfied until there is a CURE for all those with CF.
This is an exciting time for CF research. There are several medications on the market that correct the underlying genetic defect caused by the disease But, because CF is a rare disease, the CF Foundation gets no government funding and relies solely on private donations to fund research. Your donation not only helps allison and Colin gain access to improved treatments and a longer life -- it also furthers the Foundation's groundbreaking research which will benefit other genetic diseases and advance medical technology for all.
It's always a little hard to ask, but if you are able to help, please consider a donation to support Allie, Colin, and all those with CF. The daily battle to stay healthy wears us down, but when we can actively be involved in the fight for a cure, it lifts us up! We thank you from the bottom of our hearts for all the love and generosity you show!
Until It's Done!
Nearly 40,000 people in the United States have cystic fibrosis: a progressive, genetic disease that affects the lungs, pancreas, and other organs. They are moms, dads, sisters, brothers, daughters, sons, and friends who face the sobering prospect of a shortened lifespan. I walk for them.
Working alongside the CF community, the CF Foundation has fostered the development of more than a dozen CF treatments and helped add decades of life for people with CF. Yet, many people with CF do not benefit from existing therapies. Our vision 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.
You can support me!
By supporting my fundraising goal, 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.