There are approximately 30,000 Americans living with cystic fibrosis. The money raised at Great Strides helps fund research to develop drugs and therapies that will lead to a cure for CF.
On Dec. 26, 2019, Maddie took her first dose of Trikafta, a newly approved triple-combination CF drug that we've been waiting for since she was born (and others long before that)! Her lung function shot up over 10 points and it's nearly the highest she's had! She still takes all of her daily meds and her daily chest percussion treatments to maintain her health. But, within a day of taking Trikafta, she said that it's easier to breathe. Though not a cure, it's amazing that this drug is now available and I'm still blown away. However, we're standing with the other 10% of the CF population that isn't helped by Trikafta, in hopes that they will soon benefit from research & development of more specific drugs. https://www.cff.org/News/News-Archive/2019/CF-Foundation-Celebrates-FDA-Approval-of-Triple-Combination/
In 2016, Maddie participated in a pediatrics clinical trial for the drug Orkambi through UNMC and the CF clinic in Omaha. Orkambi helped with weight gain (she was able to have her feeding tube removed!), but she didn't have many gains in lung function nor did it stave off infections. In fact last year she was hospitalized twice for IV antibiotic treatments because of lung infections that her body couldn't fight off with oral antibiotics, extra treatments, etc etc, for weeks to months of the year.
These amazing advances in the fight to cure CF couldn't have happened without YOU! We walk for Maddie. We walk for everyone who fights to stay healthy -- and to find the cure for CF. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
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.