My Great Strides Story
Anne Distefano
Fundraising for Wakefield Great Strides
Anne Distefano
CYSTIC FIBROSIS GREAT STRIDES WALK - LAKE QUANNAPOWITT, WAKEFIELD, MA – SATURDAY, MAY 10, 2025
Greetings to all our friends and family! We are happy to announce that our annual Great Strides Walk to Cure Cystic Fibrosis will be held at 1 Common Street, Wakefield, MA, once again. The walk will be a 2-mile walk around Lake Quannapowitt on SATURDAY, May 10, 2025, at 11:00 a.m., with registration starting at 10:00 a.m. Individually wrapped sandwiches, chips, cookies, and water will be served. We hope to see everyone there for an eventful day of fundraising to help fund a cure for this devastating disease.
My son Joe has CF, which is a genetic disease that causes his mucous to be thick and sticky, which can clog any hollow organ, leading to chronic, and often fatal lung infections. He has done very well this past year and has been holding his own on the new CF modulator drug, Trikafta, that he started in December 2019, which now has been approved for children over 2 years of age. This past month he started the newer modulator drug, Alyftrek, as a once-a-day dose. He continues to do his daily treatments, but he doesn’t cough any more, his PFT’s are the highest they have ever been! His glucose (OGT) numbers were normal on the last two annual tests, and the kidney stones aren’t raging anymore. It isn’t a cure, but it has changed his life!
GENETIC BASED THERAPIES ARE THE KEY TO UNLOCKING THE CURE! The Cystic Fibrosis Foundation is leading the way in applying genetic based therapy research to cystic fibrosis. The Foundation has 14 genetic therapies currently in its Drug Development Pipeline, 3 of which are in phase 2 clinical trials. Genetic-based therapies are especially challenging for CF due to the lungs’ natural defenses and because of the multiple ways that CF affects the body. Each approach requires a different set of scientific tools and knowledge. One of the most exciting aspects of the research for people with nonsense mutations is that the Foundation’s research could potentially benefit not only those with CF, but people who have more than 1,000 genetic diseases. So we still have some work to do and can’t stop our fundraising efforts until the cure is found.
If you would like to join us on the walk, please register online. If you can’t join us, we would appreciate donations to sponsor Joe or Anne in the walk for his team “Still Breathing”. Our goal is to raise $7,500 for the Cystic Fibrosis Foundation to fund research to continue all their efforts, bringing new therapies to market. If you would like to make a donation, please mail a check made payable to the Cystic Fibrosis Foundation, to my attention at 19 Driftwood Lane, Lynnfield MA 01940. You can also make an online donation at my personal page: fundraise.cff.org/WakefieldGS2025/AnneDistefano where you can also register for the walk. Your donation is 100% tax deductible. If your employer has a matching gift program, please ask them if they will match your donation.
Please help us in our fundraising efforts. Your generous support has made a lasting impact on the lives of those with CF and continues to brighten their future. If you can, please join us for the walk around Lake Quannapowitt. It’s all for such a good cause. Your past support has changed my son’s life and I am forever grateful.
Thank you again for all your support and we hope to see everyone again,
Anne F. Distefano (617) 974-7805
Greetings to all our friends and family! We are happy to announce that our annual Great Strides Walk to Cure Cystic Fibrosis will be held at 1 Common Street, Wakefield, MA, once again. The walk will be a 2-mile walk around Lake Quannapowitt on SATURDAY, May 10, 2025, at 11:00 a.m., with registration starting at 10:00 a.m. Individually wrapped sandwiches, chips, cookies, and water will be served. We hope to see everyone there for an eventful day of fundraising to help fund a cure for this devastating disease.
My son Joe has CF, which is a genetic disease that causes his mucous to be thick and sticky, which can clog any hollow organ, leading to chronic, and often fatal lung infections. He has done very well this past year and has been holding his own on the new CF modulator drug, Trikafta, that he started in December 2019, which now has been approved for children over 2 years of age. This past month he started the newer modulator drug, Alyftrek, as a once-a-day dose. He continues to do his daily treatments, but he doesn’t cough any more, his PFT’s are the highest they have ever been! His glucose (OGT) numbers were normal on the last two annual tests, and the kidney stones aren’t raging anymore. It isn’t a cure, but it has changed his life!
GENETIC BASED THERAPIES ARE THE KEY TO UNLOCKING THE CURE! The Cystic Fibrosis Foundation is leading the way in applying genetic based therapy research to cystic fibrosis. The Foundation has 14 genetic therapies currently in its Drug Development Pipeline, 3 of which are in phase 2 clinical trials. Genetic-based therapies are especially challenging for CF due to the lungs’ natural defenses and because of the multiple ways that CF affects the body. Each approach requires a different set of scientific tools and knowledge. One of the most exciting aspects of the research for people with nonsense mutations is that the Foundation’s research could potentially benefit not only those with CF, but people who have more than 1,000 genetic diseases. So we still have some work to do and can’t stop our fundraising efforts until the cure is found.
If you would like to join us on the walk, please register online. If you can’t join us, we would appreciate donations to sponsor Joe or Anne in the walk for his team “Still Breathing”. Our goal is to raise $7,500 for the Cystic Fibrosis Foundation to fund research to continue all their efforts, bringing new therapies to market. If you would like to make a donation, please mail a check made payable to the Cystic Fibrosis Foundation, to my attention at 19 Driftwood Lane, Lynnfield MA 01940. You can also make an online donation at my personal page: fundraise.cff.org/WakefieldGS2025/AnneDistefano where you can also register for the walk. Your donation is 100% tax deductible. If your employer has a matching gift program, please ask them if they will match your donation.
Please help us in our fundraising efforts. Your generous support has made a lasting impact on the lives of those with CF and continues to brighten their future. If you can, please join us for the walk around Lake Quannapowitt. It’s all for such a good cause. Your past support has changed my son’s life and I am forever grateful.
Thank you again for all your support and we hope to see everyone again,
Anne F. Distefano (617) 974-7805
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