Our little fighter, Mila, was born with a genetic disease known as Cystic Fibrosis. There are currently about 30,000 people in the US that have this with about 70,000 worldwide. It affects her lungs by making it difficult for her to fight illnesses, her digestive tract so it's difficult for her to gain weight, and her sweat glands so she has a nice coating of salt on her when it's super hot. On a normal healthy day, we do treatments twice a day to keep her mucus moving in her lungs which takes a little over 20 minutes each time, and if you see her eat you'll notice that she takes these little pills which are enzymes to help her break down fats. If she does get sick, those treatments bump up to 3 or 4 times a day, and they can last anywhere from 20 minutes to an hour.
The Cystic Fibrosis Foundation supports a ton of research and last year, Mila's age group was approved for the newest medication, Trikafta. Our work is not over though because a cure is what we are after. There are Cystic Fibrosis mutations that are super rare and require genetic therapy, and a cure would eliminate the need for the constant need of taking so many pills throughout the day. What was once a childhood disease that took away our pride and joys at school age is now being managed, allowing people to reach adulthood. Fundraisers like this give us hope for a cure soon, and any contribution means more to us than you can ever imagine.
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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.