The REsearch Study to Advance the CF THerapeutics Pipeline for People without Modulators (REACH) is a study for all people with cystic fibrosis who do not take CFTR modulators, regardless of their reason. The goal of the study is to help advance new therapies for them. Below, five members of our community share how their personal experiences have motivated them to contribute to REACH.

Steph Hansen

Since the announcement of Trikafta in 2019, I struggled to find my footing while living as one of the 10-15% of patients who cannot take modulator therapy for various reasons. Although I have loved seeing folks with CF living lives they once only imagined, I often felt fearful of being left behind and wondered what was being done to help bridge the gap for people like me. 

In 2022, I decided I was willing to do anything to help move the metaphorical ball closer to the goal line. I live in a part of the country that has historically not had access to CF-related research studies through the Therapeutics Development Network, so I started searching the internet for research opportunities on my own. The following year, I started traveling across the country to participate in clinical trials. Participating in research quickly became a space that made me feel the most hopeful for the future. 

The landscape of CF-related research for the 10-15% has been growing very quickly, and earlier this year the REACH study started enrolling participants. REACH is an observational study for folks who do not qualify for or cannot tolerate CFTR modulators. So, when I was asked to join the REACH study’s Social Media Engagement Board, which helps spread the word about the study, it was an easy yes because this inclusive study has the power to shape future clinical trials for people living without modulators! I hope to continue to engage with my fellow community members about exciting research opportunities like the REACH study, made possible by the CF Foundation, for a brighter, healthier future for us all.

Xan Nowakowski

I’ve never felt very invested in the idea of a cure. I’ve always said that I don’t want to be a person without CF, but rather that I want to live the best life I can as a person with CF. Many folks in our community have found pathways to that better life through CFTR modulator therapies. I’ve seen the joy of finally finding something that works for people who tolerate their modulators well, along with the sorrow of realizing the drawbacks outweigh the benefits for those who experience serious side effects. I’ve watched from the sidelines as the world of cystic fibrosis has changed around me and my peers.

Those of us who do not benefit from modulators often have a few things in common. We’re often multiethnic and/or people of color. And if we face additional issues accessing a CF diagnosis and care — let’s say we’re cross-disabled, or queer, or trans, or neurodivergent, or poor, or rural-dwelling — we often spend our days surviving rather than thriving. I know we can do better; joining the REACH study lets me put that knowledge into action. This project lets us lay a foundation for brighter tomorrows together. 

Having something just for us feels precious and raw and overwhelming. I’m still getting used to playing on the field rather than standing on the sidelines.

Sometimes the cognitive dissonance fills my head with static before letting any light through. Putting cynicism aside in favor of cautious hope has brought me face-to-face with trauma I didn’t know I had. I’m gradually learning how to make space for enthusiasm about how my own treatment options may expand in time. And I’m allowing myself to feel genuine excitement about a future that has always seemed a little out of reach.

Nick Kelly

I could start by telling you what the REACH study is, but honestly, that wouldn’t be the right place for me to begin. Up until recently, I couldn’t have really explained it myself. I just knew it was a study I was participating in.

Now, before you think differently of me, let me explain. Research has always been deeply important to me — so important, in fact, that I often choose not to focus on the details of it. My approach has been simple: if a study comes my way, I generally say yes. I only ask two questions: Is it going to hurt? And does it involve a transbronchial biopsy? If the answers are no, I sign up. Once, I even got a check in the mail for participating in a study I didn’t realize I was being paid for.

Why do I do this? Because research matters. Without research, there is no progress. Without progress, there is no way forward. And without a way forward, there is no hope.
My mother always taught me: what’s good for the few is good for the many. That’s a lesson I’ve carried throughout my life with CF. I advocate for research not just for myself, but for others — including those who look like me, who don’t often see people who look like them represented in these spaces. I advocate for the minorities affected by this disease who haven’t always had someone to champion their voices. I want to be a face of trust in a system where mistrust has too often been earned.

That’s why the REACH study is so important. It highlights people like me — those who do not benefit from modulators — and ensures that we’re seen. It works to gather information that can lead to real change. 

I know everyone has their own circumstances and feelings about research. But I urge you, whenever you can, to take part in it. Because research is the only way to create a better future.

Shelby Luebbert

When I was initially invited to be part of REACH, I knew that, whatever it took, I was fully on board with providing support. I already knew Dr. Deepika Polineni, one of the study’s investigators, as she was a key leader in helping me turn my health around. I was thrilled when she approached me to help spearhead this with other adults with CF. I knew the impact we could make. 

I have an interesting position within this group, as I am currently taking modulators and therefore am not part of the ideal subset for this study. But because of my experience with being on the sidelines and going through all the struggles I have thus far in my adulthood, Dr. Polineni knew she wanted me to be a part of this. At the time I first met her, my health was failing me, and I was a skeleton of the person I am today. I was not initially eligible for modulators, but I had hoped one day things would change … and things did change, with her help. 

There is a program called theratyping that tests modulators on cells from people with CFTR mutations so rare that they aren’t typically included in large clinical trials. This incredible program is what has helped expand eligibility to modulators to so many additional mutations. I had my theratyping test at the end of 2019 and was able to use the results to get my insurance to cover a modulator by September 2020. And to be honest, at the time, I had wished my baseline levels could be used for research like what the REACH study is doing today. 

Things like theratyping are what have helped shape the REACH study. We, as adults with CF, have always been the teachers, in a way. It’s both empowering and scary at times, but knowing that the work we do today will help future generations (along with so many of us) is what keeps me going. The last 10-15% of people who cannot take modulators are crucial to our progress, and knowing what so many others have done for me is exactly why I do what I can to be a voice and a guide to everyone.

Jesus Chavez

Being able to share my story with the world — and especially with the CF community — is an honor. Our goal is that one day, CF stands for a cure found. But my interest in joining REACH is to be able to say that everyone is eligible for a treatment. Having gone through my own battles such as exacerbations or hospital stays has made this work important for me. I have to continue fighting to stay as healthy as possible, so I can see my daughter grow and make amazing memories with my family.

REACH has shown me that I’m not the only one out there who isn’t eligible for modulators, but we don’t stop living our lives. We continue to fight every single day. This battle is what inspired me to jump into the opportunity to join REACH. Being able to gather ideas and come together to show the CF community that we won’t stop until the work is done — that you’re not alone with this fight, and we are here if you need someone to talk to. Don’t give up; our fight isn’t over.

Interested in sharing your story? The CF Community Blog wants to hear from you.