To The Editor:
On May 18 the Central New York Chapter of the Cystic Fibrosis Foundation will once again host the Ogdensburg Great Strides walk.
Great Strides is the foundations largest fundraising event in which thousands of participants come together each year to help find a cure for cystic fibrosis (CF), an inherited chronic disease that affects the lungs and digestive system of approximately 30,000 children and adults in the U.S.
The Cystic Fibrosis Foundation is the worlds leader in the search for a cure for cystic fibrosis. As a nonprofit donor-supported organization, the foundation is dedicated to attacking cystic fibrosis from every angle, by supporting the development of new drugs to fight the disease, improving the quality of life for those with CF, and, ultimately, finding a cure.
Great Strides provides an opportunity for whole communities to get involved by forming teams through their workplace, clubs and organizations, or with friends and family. Walk day is a fun, family-oriented celebration that includes a healthy walk, Kids Corner activities, food and festivities that participants look forward to every year.
Significant progress has been made toward a cure for CF, as illustrated by the story of a local young man named Tim. Diagonosed with CF at three months old, Tim was only expected to live to age 16. Thanks, in part, to the foundations support of medical research and the development of the drug kalydeco, Tim is a healthy 24-year-old pursuing his doctorate in chiropractics. Tim is fortunate that his genetic mutation responds favorably to kalydeco, allowing for a complete reversal in the effects of CF at a cellular level.
Unfortunately, not every CF patient has the same genetic mutation as Tim – research shows only 4 percent of patients do. While the availability of kalydeco is a true miracle for patients like Tim, there are still thousands of patients and families that are waiting for this miracle as well.
Great Strides team leaders from across the north country are needed to ensure the walks success. Developing a team is an excellent way for businesses, families, friends, clubs and organizations to raise money and contribute to helping us finding a cure.
To register or for more details, visit centralny.cff.org or call (315) 463-7965.