Hi Everyone: It's Great Strides season, and Katie and I are gearing up for our 22nd walk, which this year will be virtual as well as in person at the Akron Zoo on May 14. In the time since we went to our first walk, when Maddie was about five months old, we have learned so much about how much the Cystic Fibrosis Foundation does to help the CF community, most notably with helping to fund research. Maddie has been on Trikafta — a drug that treats the underlying gene mutation at the cellular level — for about two years and it's been a game changer for her. She still has to do daily breathing and Vest treatments, and she still takes many daily medications, but the fact that she feels as good as she does is remarkable. She has had to deal with some complications of CF, but she has not had a significant lung issue for several years.
Trikafta and its sister drugs, created by a smaller pharmaceutical company called Vertex, were made possible with funding from the CF Foundation. Because CF is considered a rare disease, affecting only about 70,000 to 100,000 people worldwide, drug companies do not have a lot of incentive to pursue treatments for the disease. That is why the CF Foundation fundraises and why we know it is important to help it do so.
CF causes thick, sticky mucus to clog the vital functions of internal organs, including the lungs, pancreas and liver. We are hoping with improved treatments and medications, the progression of CF will be significantly slowed and a cure will be realized in Maddie's lifetime.
Katie and I are asking that you please consider supporting Maddie's Miracle Team this year with any amount. Please help us meet our personal fundraising goal of $2,000 and our team's goal of $3,000 by sponsoring us in support of Maddie. Nearly 90 cents of every dollar donated goes to the foundation’s programs and research outreach, and the CF Foundation has earned an "Exceptional" rating from Charity Navigator.
To join our team, please click the "Join My Team" link at left. It will give you information on how to raise funds for the team. To make a donation to Maddie's Miracle Team, please hit the secure "Donate" link at left. Any amount you can donate is greatly appreciated!
To learn more about CF, please see the Maddie's Miracle Team page or visit the CF Foundation's website at www.cff.org.
Thank you for helping CF stand for Cure Found!