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My Great Strides Story

Lisa Willig

Fundraising for Pittsburgh Great Strides 2026

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Lisa Willig

Dear Friends and Family,


My name is Lisa Willig, and I'm writing because my daughter, Sydney, needs your help.

Sydney is an active, energetic, almost\u201123\u2011year\u2011old who loves people and lives life at full speed. She water skis, races downhill on snow, runs, and is living her dream as a 6th\u2011grade learning support teacher. Her determination to beat Cystic Fibrosis (CF) is as strong as her passion for education.


Sydney was diagnosed with CF at just two weeks old. Over the last 23 years, we've learned more than we ever imagined-especially after her diagnosis of CFRD (Cystic Fibrosis-Related Diabetes) nearly 12 years ago. CF causes her body to produce thick, sticky mucus that makes breathing difficult and affects her digestive system. Thanks to advances in treatment, Sydney lives a full life, but it comes with many "extras."


The last few tears have not been easy for Syd. Sydney endured multiple hospital stays and long courses of IV antibiotics while still attending college. Since 2022, she has been fighting a persistent microbacteria in her lungs. For nearly four years, she has taken three antibiotics to combat it-one of which isn't FDA\u2011approved in the U.S. and must be shipped from Canada. Finally, in March 2026, Sydney received her second consecutive non\u2011positive culture, allowing her to stop those three antibiotics after an exhausting journey.


Even with Trikafta, which she began shortly after FDA approval, Sydney continued to struggle. By late 2024, it was clear the medication wasn't working as it should. In March 2025-just a month after FDA approval-Sydney transitioned to a new medication, Alyftrek. It gave her the boost we had been praying for, sending her PFTs soaring. But now, if Alyftrek stops working, there are currently no other medications available. This is exactly why we fundraise. And since her most recent bronchoscopy showed that Alyftrek is no longer doing its job, we continue to fight for the next miracle drug.


In addition to Alyftrek, Sydney now takes six enzymes with every meal and more than 300 pills in a healthy week. She completes daily breathing treatments and uses a vibrating vest twice a day-600 minutes a week-to keep her lungs clear. Since her CFRD diagnosis, she wears a continuous glucose monitor and began using an insulin pump in August 2024. Managing her blood sugar is a constant challenge, especially with her running and the interactions between CF, diabetes, and her medications.


There is currently no cure for CF, but with your help, one could be within reach. The drug pipeline and gene\u2011replacement therapies offer real hope and are already in trials. Because CF affects a relatively small population-about 40,000 children and adults in the U.S.-the CF Foundation must often fund its own drug development. Nearly 1,000 children are diagnosed each year, and every breakthrough depends on continued support.


Sydney is not sitting back and waiting. She was a BEF athlete throughout her four years of college soccer and works with the National CFF to share her story and advocate for a cure. She spoke at the National CFF Conference this past October and, despite setbacks this year, is training to run the Pittsburgh Half Marathon in May. Most importantly, Sydney does not hide her CF. She wants people to understand her fight, her daily reality, and the pride she takes in her resilience. Your donation supports her mission to find a cure.


The past 23 years have taught us so much-and have shown us the incredible future Sydney deserves. We hope you will help make that future as healthy as possible. It is frightening to think that we have no next medication waiting in the wings.


Thank you so much for your support. We are in this until it is done.

Lisa Willig

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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.