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My Great Strides Story

Colleen Argentieri

Fundraising for Rochester Great Strides

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Colleen Argentieri

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 (34) and Carley (28) 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 9.5 years post-transplant & remains in good health.
  • Brooks Alexander, Alexandra and Alex’s biological son is now 18 months, and continues to bring our families incredible happiness!!
  • Carley, a healthy pediatric nurse, and Michael will welcome a son in June. Her pulmonary functions are in the 90s, significantly improved from the 40s in 2019 before Trikafta was approved. Before Trikafta, few women could conceive or carry a child to term.
  • Ashtin (non cf) & her husband, Connor, welcomed beautiful Avery Jane on July 1, and she too brings such joy and fun to our families. 
  • The Cystic Fibrosis Foundation (CFF) now has five drugs for people with CF, including Trikafta, which transformed many lives such as 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, many continue to suffer!
  • 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 field and currently has four 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 two 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. BEYOND AMAZING!!
  • 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 to do so, we continue to need your help! Please consider sponsoring our team or making a donation to raise funds for those without a viable treatment, and to find a cure. Let’s end this disease! Your gift is 100% tax deductible! Thank you for supporting us and the Cystic Fibrosis Foundation mission.
 
We are deeply grateful,
Colleen & Fran
 

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The CF Foundation is committed to providing a safe, inclusive, and healthy experience for individuals attending Foundation Events. Individuals attending CF Foundation events must abide by the Foundation's Attendance Policy and accompanying guidelines, which include guidance for event attendee's living with cystic fibrosis.