It’s that time of year again - “CF Season” is here! Here's a recap of the present and past year to bring you up to date. Before I get started, let me announce our new team’s name: Go, Go Gallihues!
For those who haven’t heard, this year marks my 2nd year in college, at the University of Maryland. It also marks my first year as a Music Composition Major, after changing it last Spring from vocal performance. School got hard going into my sophomore year. But that’s ok, because my schedule is jammed packed with things equally stressful and fun - writing new works for professional groups, adventuring in national parks*, performing in an opera, singing with the BSO (Baltimore Symphony Orchestra), directing a choir, it’s... a lot. You may wonder, “How on earth do you have time to manage CF with all this?” I’d answer that question two ways. First, I have a lot of practice. Over 20 years of practice, in fact. Being at college isn't my first time on my own doing treatments so I know the drill. The second answer is a bit less positive: “How do I have time?” Sometimes I don’t. At this point, I think everyone who reads this (and me writing this), is an adult, so I don’t need to explain to you how hard “adulting” can be. Adulting pressures have really hit me hard this year and sometimes I can't always fit in all my treatments as much as I try.
Which brings us to my current situation. I’m writing this message on a Monday night, from Johns Hopkins Hospital. I’ve been here for the past two weeks!!! Good news though, I will get out soon! I was hospitalized for an infection, but don’t worry - not the big, bad, non-tuberculosis mycobacteria abscessus (NTM) that plagued me for nearly 7 years. This time it was a "minor" flu that became a major issue (weight loss, lung function decline, exhaustion, etc.). My sputum cultures have tested negative for NTM for the past year! (Update March 2023-I went to the National Institutes of Health (NIH) during spring break, where I’m part of a study on NTM and bronchiectasis and because of my progress all antibiotics related to NTM were eliminated! Woo hoo!!! There is no guarantee it will not come back but having 4 drugs removed from my daily regimen is huge!)
I want to make it clear, other than this current visit to “Hotel Hopkins,” I’ve been surprisingly super healthy these past two college years. Singing all the time (and walking across campus) keeps me in shape! But I’d be remiss if I didn’t mention- you guessed it, the ultimate reason I've been so healthy-Trikafta. This drug, although I am on a miniscule dose because of my liver disease, is keeping me and almost all of those with CF healthy and alive. There is 10% of CF population that can't take Trikavta, and they need a “miracle” drug too! And there are lots of other CF related symptoms and conditions that need funding to help eliminate or manage. It really can’t be overstated how much the drugs and treatments developed with funds from the CF Foundation benefit people with CF. But these drugs only come along with lots and lots of support (aka donations from you)!
I wanted to let you know there are a few changes to our fundraising this year. My schedule does not allow us to do the annual party/walk at our house as we have done since pandemic. After pandemic our Bel Air walk was eliminated and we have been officially part of the Baltimore Walk, so if you can, please join my parents (Taylor and I will still be at school) at the Baltimore Zoo on Thursday, May 11 5:30- check in 6:00 walk begins. More info: https://fightcf.cff.org/goto/GoGoGallihues
I am, and always will be, deeply appreciative of the support each of you has given me throughout my life. I wouldn’t be in the place I am without your continued support, and there isn’t a day where I’m not grateful for you all.
Li and the Go, Go Gallihues
*In my letter last year, I think I mentioned being granted a wish from Make a Wish Foundation. Well, my dream came true last June when my family and I were treated to an incredible trip to Yosemite National Park and San Francisco. My wish is to visit every National Park and Make a Wish helped put that wish in motion. Since June 2022 I've been to others on my own including Shenandoah, Everglades, Cuyahoga Valley, Biscayne, and head back to Acadia in June 2023
Mom Addendum: Not much to add other than without our annual walk and silent auction at our house this year we need even more donations to make our annual goal!
Anything you can do to help us fundraise this year is greatly appreciated, so feel free to share with your contacts and if you have a fundraising idea, go, go for it! It’s been weeks since Li wrote this letter and I’m finally finishing my part as I sit in a practically empty house in Ocean City, NJ. Settlement is this week. I’m a bit melancholy reminded of my mom, aka GaGa sitting at this desk for almost 19 years writing letters and cards to her friends and family raising funds for CF Foundation. It’s an extremely bittersweet time! Her spirit is strong (how could it not be, we’re talking about GaGa here! LOL) as this was such an important part of her life, loving and supporting her grandchildren and doing whatever she could to cure CF!
Thank you so much for your endless support! - Suzi
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