Update on Maren 2025 

This year I’m writing the CF letter. Mom suggested that we make this like a Q&A 

Q: What are you up to? 

Maren: I am a second year in Iowa in the Public Health program, with plans to graduate next year and attend graduate school.  I’m really interested in advocacy and have worked on some cool research projects too. 

I work at the Rec Center, and in my free time I hang out with my friends, attend Iowa sporting events, travel, and spend a lot of time watching shows with my 5 roommates!  

This summer I am returning to New York City to work with foreign exchange students! My role is to serve as part of the orientation crew for students from Europe, Asia and South America who are embarking upon their high school exchange year. This is the same program through which my family hosted, Joris, our exchange student in 2021/2022. I worked there last year and I loved it. 

Q: How would you describe your current health status? 

Maren: Thanks to the new drug (Trikafta) that I started taking as part of a clinical trial in 2018, my health has really improved. Currently I have the best lung function I’ve had in 10 years. When I first entered the clinical trial my lung functions were in the 60s now its 101%!  

While I developed CF related diabetes several years ago, lately l’ve had some of the best glucose readings I have ever had! I’ve stopped taking insulin, removed my feeding tube, and maintained my lung function with less chest therapy! I still need to stay on top of my health with exercise, hydration and good nutrition, but things are mostly stable. I’m more independent about my health. For example, cooking for myself and paying more attention to what I eat. 

Lately, my more challenging symptoms are less lung-related (and perhaps side effects of treatments) kidney stones, digestive problems, anxiety, and tiredness.  In late May I’ll have surgery to remove a very large kidney stone. 

During my first semester of college, I transitioned from the pediatric CF clinic to adult CF clinic. Now I see new doctors but also have some familiar faces too. It’s been complicated but I’ve worked hard to navigate for myself. 
 

What’s different in your life before and after Trikafta: 

Maren: I can take a full breath.... all the time. I only realized how hard it was to breathe after I started taking the new medication. I do less therapy.  I used to spend 45 minutes twice per day.  Now, I do therapy a few times a week or more when I need it.  Last year I received a new therapy device that is cordless meaning that I can walk around and do things like cook while I finish my therapy. 
 
I still have to eat a lot, but I have been able to maintain my weight more easily.  I don’t have to take steroids as often.  I go to the doctor half as often (twice per year instead of four times per year).  Life is much easier now that we have Trikafta. It’s hard to imagine balancing college with all of the CF stuff I used to have to do. 

What kind of research are you involved in? 

Maren: After the clinical trial I’ve continued to be involved in research studies. I just finished a study that’s helping doctors to find new ways to measure health. They’re looking for a better method than BMI.  I’m hoping to get involved in a few more this year.  I like to be involved in these studies because it improves my well-being and helps other people. It’s nice to be so close to the clinic/research center because then it's easy to participate. The University of Iowa is a leader in CF research, including the next generation of Trikafta – Alfytrec, which is designed to make it easier to take. 

Why are you supporting Great Strides on May 10 in Iowa City? Why keep supporting the Cystic Fibrosis Foundation? 

Trikafta has changed my life. I want to thank the researchers and the CF Foundation for making Trikafta a reality. Some people can’t take the modulator (Trikafta) because of their genetic mutations, and I want them to get better too. For folks in that group they are exploring genetic editing. CFF is also studying how to help people who are resistant to antibiotics.  That’s important for people who were already very sick before they could take Trikafta. Even with Trikafta lots of us still struggle with mental health, digestive issues and CF related diabetes, so CFF is looking for new solutions.