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My Great Strides Story
Deborah Friedson
PLEASE JOIN OUR GREAT STRIDES TEAM
The CF miracle is one of the most remarkable stories in modern medicine. Cystic fibrosis genetic testing is now almost universal, and mutation-based drug prescribing is standard practice. This offers a template for other diseases looking to translate the promise of precision medicine into patients' daily lives. Cystic fibrosis research is impacting our global community in ways we never imagined!
The Cystic Fibrosis Foundation is deeply concerned by the devastating impact that severely and suddenly limiting indirect costs will have on the CF research community and the United States biomedical research system. The story of progress would not exist as it does today without The National Institute of Health and the research it supports. The CF Foundation is committed to safeguarding research, essential for helping people with CF live long, fulfilling lives. As this situation evolves, we are actively determining how we can best support the CF research community. We remain committed to collaborating with our community and with the NIH to effectively treat, and ultimately cure CF.
For our family, our son Matt has made huge strides. His lung function is up, and he has been able to drop some of his treatments. Trikafta has had some challenging side effects for Matt but he is very proactive and problem-solving where necessary. Matt and Olivia are wonderful parents to their almost 4-year-old daughter Harper and are expecting another miracle baby in the summer. It’s an amazing life we only dreamed of years ago! We are truly blessed.
We continue to need to support research for our changing CF community because we do not yet know the unintended consequence of new classes of drugs as our CF population grows older. Genetic therapies will create improved results for all patients with CF regardless of their mutation, and eventually, a one-time cure. We are not done with our research for a cure for cystic fibrosis. There are treatments for some/not all, but the cure has still not been found.
Will you walk with us this year? Create a team no matter where you are located. Could you help us raise money for a cure? Our work is not done. Please join us. We thank you from the bottom of our hearts. You have made a difference. Let’s work together to make CF stand for Cure Found!
Love, Deb, Art, Matt. Olivia and Harper Friedson
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