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:
To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To help minimize the risk of COVID-19, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.