My Great Strides Story
Alexandra Fitzpatrick
Fundraising for Rochester Great Strides 2026
Alexandra Fitzpatrick
Dear Family & Friends,
For most, you have read our annual Argentieri’s Avengers letter for more than 30 years, and for that we are extremely grateful. Throughout those years, we have shared stories of the pain and suffering Alexandra (35) and Carley (29) have endured as well as those struggling to live with cystic fibrosis, and yet we have also been able to share the incredible blessings and progress made! We continue to remind all of you that were it not for people/companies like you/yours, those blessings and progress would not be possible.
Instead of detailing their grueling daily routines and hospital stays of earlier years, I'd like to highlight the blessings and the significant impact your support has had on their lives as well as those living with CF. While we are grateful, our journey is ongoing and we still need your help.
While we celebrate many incredible milestones, our work continues until there is a treatment or cure for everyone with CF, and the gene therapy/gene editing arena is not millions, but billions of dollars, so we continue to need your help! Please consider sponsoring our cause or making a donation to raise funds for those without a viable treatment (still suffering), and to find a cure. Let’s end this disease and ensure that everyone with cystic fibrosis has the support they need to live the full and spectacular life they deserve. Your gift is 100% tax deductible! Thank you for supporting us and the Cystic Fibrosis Foundation mission.
We are deeply grateful,
The Argentieri Family
For most, you have read our annual Argentieri’s Avengers letter for more than 30 years, and for that we are extremely grateful. Throughout those years, we have shared stories of the pain and suffering Alexandra (35) and Carley (29) have endured as well as those struggling to live with cystic fibrosis, and yet we have also been able to share the incredible blessings and progress made! We continue to remind all of you that were it not for people/companies like you/yours, those blessings and progress would not be possible.
Instead of detailing their grueling daily routines and hospital stays of earlier years, I'd like to highlight the blessings and the significant impact your support has had on their lives as well as those living with CF. While we are grateful, our journey is ongoing and we still need your help.
- Alexandra is 10.5 years post-transplant & remains in good health.
- Brooks Alexander, Alexandra and Alex’s biological son, is now 2.5 years and the joy and laughter he brings to our family is indescribable!!
- Carley, a healthy pediatric nurse, and her husband, Michael, welcomed their beautiful son, Callahan Michael, on June 22. Our blue-eyed boy is a treasure. Carley’s pulmonary functions continue to be in the 90s, significantly improved from the 40s in 2019 before Trikafta was approved. Before Trikafta, few women could conceive nor carry a child to term. Risk was extreme to even survive.
- Ashtin (non cf) and Connor are well, and precious Avery Jane continues to melt our hearts!
- The Cystic Fibrosis Foundation (CFF) has five modulator drugs for people with CF, including Trikafta, which transformed many lives as it did Carley’s. The latest drug, Alyftrek, approved in December 2024, is a daily combination therapy of three CFTR modulators to correct the defective CFTR protein. It is approved for individuals with CF aged 6 and older who can take Trikafta or have one of 31 rare mutations. A phase 3 trial is testing its safety in children aged 2-5.
- The CFF continues research and progress for patients where there is NOT a viable treatment.
- The CFF continues research to identify early rejection for patients who have had lung transplants, like Alexandra.
- The Cystic Fibrosis Foundation (CFF) has entered the genetic therapy arena and currently has five potential drugs in Stage 2 clinical trials, which have the potential to become a cure.
- There are currently 40,000 individuals living with cystic fibrosis, an increase of 10,000 from three years ago due to advancements made. People are now living longer and healthier lives.
- Our community has collectively raised over $1 million towards research and the pursuit of a cure.
- Several dreams that were once thought unreal have been realized—our three daughters are healthy and leading fulfilling lives. This remarkable achievement would not be a reality without all of you, THANK YOU!!!
While we celebrate many incredible milestones, our work continues until there is a treatment or cure for everyone with CF, and the gene therapy/gene editing arena is not millions, but billions of dollars, so we continue to need your help! Please consider sponsoring our cause or making a donation to raise funds for those without a viable treatment (still suffering), and to find a cure. Let’s end this disease and ensure that everyone with cystic fibrosis has the support they need to live the full and spectacular life they deserve. Your gift is 100% tax deductible! Thank you for supporting us and the Cystic Fibrosis Foundation mission.
We are deeply grateful,
The Argentieri Family
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