My Great Strides Story
Fundraising for Baltimore Great Strides 2026
Lily gallihue
You’d think that after nearly 15 years of writing (or at least, dictating) these CF letters, they’d get easier. Instead, this year’s was one of the hardest — maybe because it’s the last one I’ll write as a student. I’m finishing undergrad, stepping into adulthood, and reflecting more than usual on what that means as someone with CF. “Adulthood” is a particularly meaningful word to anyone with CF.
For most of CF history, adulthood itself was never guaranteed. When I was born, studies estimated a life expectancy of 36. But those predictions came before breakthroughs like Trikafta and other CFTR modulators changed the landscape completely. We truly don’t know any more what’s possible — and that uncertainty, for once, is just as hopeful as it is anxious.
There’s also a lot of worth celebrating. I’ve stayed healthier this year despite an incredibly demanding schedule of composing, performing, and preparing my senior recital, JOURNEYS (https://youtu.be/wE12sIqMF-M?si=NdcNqsCoC4qAwnRn, I hope you’ll enjoy it as much as I do.) I haven’t been hospitalized or coughed up blood since early 2025, my GI symptoms are finally improving, and even getting the flu in December, and for first time in a long time it didn’t spiral into a hospitalization.
And I’ve done all of this in conjunction with increasingly potent hormone-replacement-therapy to no adverse effects. Those victories exist because of decades of research, advocacy, and support from people like you.
But the work isn’t finished. Many people with rare CF mutations still lack effective treatments, and huge gaps remain in understanding the GI side of the disease. And finally, while I suspect my “mileage” is much higher than 36, if it’s at 55 right now, I want it at 80. I’m a classical music composer after all: I don’t start writing the good stuff until 65.
Supporting the CF Foundation matters now more than ever. Not only is the disease itself terrible, but the war has a new front: an ideological battle for the value of financing medical research itself. (https://www.cff.org/press-releases/2025-04/cf-foundation-responds-mass-reductions-force-across-fda-nih) Every donation helps push us closer not just to longer lives, but to better and more just lives — fuller childhoods, fuller adulthoods, and many more miles ahead.
Thank you as always for your support! Every dollar you give literally helps me live a longer and healthier life!
With Deep Appreciation,
---- Lily
Mom Addendum —
I don’t have much to add (a first-LOL)- you heard it from her herself: she’s an adult now, and she’s got this.
No longer do I need to nag her about taking dozens of pills a day, doing nebulizers multiple times daily, or keeping up with physical therapy. She manages it all on her own now! And unlike when she was little and occasionally (or was it often?), just said she had done her treatments, she truly makes her health a priority in her very busy adult life. I guess all that nagging really did pay off.
I also think that as college brought more health challenges and hospitalizations, she realized even more deeply that CF is not “just” a lung disease. The GI issues she struggled with for so many years were very real, frustrating, and exhausting. Seeing her advocate for herself, push through difficult days, and still accomplish so much continues to amaze me.
Now, if I could just get her to write the annual CF letter without a million reminder texts and emails (slight exaggeration)… we’d really be making progress.
As always, thank you for your love, encouragement, prayers, positive energy, and generous donations over the years. Your support has helped make the incredible advances in CF care possible, and it means more to our family than we can ever fully express.
I could not be more proud of all Lily has accomplished, and I can’t wait to see where adulthood takes her next.
Thank you for reading, caring and donating. Every dollar makes a difference!
All my best,
---Suzi
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