Hi, I’m Rebecca! I have accepted a nomination to be an Honoree in the Cystic Fibrosis Foundation “CNY’s Finest” class of 2024! 

This program recognizes “outstanding professionals in the CNY community” (with or without CF) while we fundraise for the foundation. I was diagnosed with CF, a genetic chronic illness that affects all systems of the body, at birth. This hopeful message has been drilled into me since I was a toddler: “One day, CF will stand for Cure Found.”

But the truth is, I’m not particularly wishing or longing for a cure. 

Here are the reasons I am feeling really motivated to fundraise for the CFF right now. 

1) Therapies for EVERYONE with CF

Trikafta and other CFTR modulators are groundbreaking medications that have become available over the past few years, thanks to research supported by the CFF. They aren’t a cure, but they are the first medications ever that treat the root cause of CF rather than the symptoms. They’ve led to significant strides in the length and quality of life for people with CF.  

I’ve been fortunate to be able to benefit from Trikafta. I started it in 2019, and I realized at a recent Clinic appointment that I can’t remember the last time I had a “CF Exacerbation,” which I had almost constantly when I was growing up. When I was born, the average life expectancy for CF was only 18 – and now it’s 61, and continuing to rise. 

CF still has a big impact on my daily life; I need to take pancreatic enzyme pills every time I eat, and I spend about two hours per day doing my airway clearance treatments (Monarch Vest and Nebulizers). My lungs are still mucusy and colonized with Pseudomonas bacteria, I’m still considered high-risk for Covid and other illnesses, and I often find that I need lots of rest time built into my routine. But now there’s a reasonable chance that I may be able to live as long as any of my peers. 

Unfortunately though, not everyone with CF has been able to access these life-changing medications. There are actually different “versions” of CF, caused by different genetic mutations of the CFTR Protein. The modulators we have right now are only effective for certain mutations. About 10% of “CFers” still don’t have a modulator that can help them. I want them to have what I have now. Your donation will contribute to research and development for more CFTR Modulators. I eagerly await the day that 100% of people with CF can take a Modulator like Trikafta, or have another therapy with similar effects. 

2) Navigating Access to Healthcare 

In addition to medical research, the CF Foundation has a program called “COMPASS” which helps patients navigate their healthcare options. Last year I turned 26 and had to leave my parents’ insurance plan. It was an extremely stressful transition, and COMPASS was instrumental in helping me figure out what options were available so I could decide which one was best for me. Then they helped me apply. Each patient who uses COMPASS gets a case worker who personally helps them through the whole process via email and phone conversations. I ended up getting Medicaid through New York State based on income, and since then I have had (almost) no trouble getting my (many) prescriptions delivered each month. It doesn’t matter what drugs have been invented if patients can’t access or afford them. 

The peace of mind I got through the help of COMPASS allows me to function in my daily life almost as much as the medications themselves. 

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And, for the people with CF who do hope for a cure, I want to help make it happen on their behalf. 

For my part, if a cure really does become available during my lifetime, when that day comes I’ll need to thoughtfully assess whether I want to take it. Will it make sense for my life at that point? Will there be any risks associated with a cure, and will they be worth it? CF is a part of me. It always has been. It’s a part of every single cell of my body. My wish is simply to live a long, healthy, and fulfilling life – whether CF is a part of it, or not. 

Your donation can help make that happen. Buy a ticket for our "Savoring the Salt City" event coming up on Saturday November 9, or simply leave a gift here on my page.

Thank you for reading my story, and thank you for your contribution. 

 

~ Rebecca