Join our team and help add tomorrows!
Through fundraising like this amazing scientific advancements on new drugs have been developed! For the first time, the median predicted life expectancy for a child born with CF today has reached 53 years, up 15 years from just a decade ago. Think about that, I'm 38 years old, that was the median life expectancy only 10 years ago for a child born with CF. Through your donations and fantastic advancements in medical treatments kids born with CF are living longer healthier lives. There are still people with certain CF mutations who are waiting for their breakthrough drug. Real progress has been made for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. We’ve come so far, but there’s still so much work to do.
As you may know our daughter Evelyn was diagnosed with Cystic Fibrosis through pre-natal bloodwork and amniocentesis. This makes her life a little bit different that you and I. With the two mutations Evelyn has, she was lucky enough to qualify for Kalydeco at 8 months old. Every morning and night she must take her medicine which she takes like a champ.
Every day Evie does her chest PT which consists of wearing a vibration vest for 30 minutes. If anyone wants to see her "Flower power" vest Evie is very proud to show it off! If she has any type of respiratory illness then she does PT twice a day to help break and expel any mucus in her lungs. Illnesses also mean she more often goes on liquid anti-biotics which she gladly takes with the help of a "Target" prize bag.
But through all of this, she doesn't miss a beat. Her favorite things to do right now are fighting "bad guys," bossing everyone around, playing with her cousins, and crafting.
Abbey and I can't believe the support we've received from friends and family over the last 5 years. It's really inspiring to see how everyone has rallied around this great cause to find a cure.
Let's keep the momentum going in 2023.
With gratitude,
Tim, Abbey, and Evelyn Faulhaber
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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.