It's Great Strides season, and Tom and I are gearing up for our 23rd walk on May 6, which will again be at the Akron Zoo.
Great Strides funds research spearheaded by the Cystic Fibrosis Foundation to find a cure for CF as well as life-prolonging treatments and medications. We hope you'll help us help our daughter, Maddie, as well as thousands of others who have this life-shortening disease.
CF is caused by a gene mutation that creates an unbalance of water and salt in cells. As a result, the body creates a thick, sticky mucus that clogs the vital functions of internal organs, including the lungs, pancreas and liver.
The disease not only causes damage to the lungs and digestive system, but it can also lead to secondary diseases like diabetes and cirrhosis of the 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.
In the time since we went to our first walk, when Maddie was about 5 months old, we have seen how much the CF Foundation does to help the CF community, most notably with helping to fund research.
With the foundation's help, Vertex Pharmaceuticals created several drugs to help patients with different gene mutations, which is complicated by the fact that more than 1,700 CF gene mutations have been identified so far.
Because CF is considered a rare disease, affecting only about 40,000 people in the U.S. and 105,000 people worldwide, drug companies don't have a lot of incentive to pursue treatments for the disease. Vertex wouldn't have pursued these drugs if the CF Foundation wasn't financially backing the trials.
This is why it's so important for us to help the foundation raise money for research. We see how its fundraising dollars are spent.
Finding a cure
Maddie has been on Vertex's Trikafta -- a drug that treats the underlying gene mutation at the cellular level -- for about three years and it's changed her life. She still has to do daily breathing and Vest treatments, and she still takes many daily medications, but she feels good and hasn't had a significant lung issue for several years.
It gives us hope for her future.
But while Trikafta and its sister drugs slow the progression of this life-shortening disease, they aren't a cure. And that's what we are hoping to help find for Maddie and so many others.
Tom and I are asking that you please consider supporting Maddie's Miracle Team with any amount.
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!