Page 27 - CF Roundtable - Winter/Spring 2026

Trust and Transparency Are Key
One thing that makes a huge difference is having a research
team I trust. The doctors and staff at my research site have
been incredible—they’re open, honest, and supportive every
step of the way. I’ve never felt judged for asking questions or
voicing concerns, and that level of trust has been crucial for
me. Knowing that they genuinely have my best interests at
heart helps me feel more confident about participating.
Doing It for Myself—and for Others
When I take a step back and think about why I do this, the
reasons are clear. I’m doing this for myself, to give myself the
best chance at a longer, healthier life. I’m doing it for my wife,
who has been my rock and my greatest supporter. I’m doing
it for my family, who have always wanted the best for me.
But perhaps most importantly, I’m doing it for the CF
community. I know there are people out there who, for one
reason or another, can’t participate in trials. Maybe they don’t
qualify, or maybe the demands of the trial—like frequent travel
or time off work—make it impossible. I feel a responsibility to
step up for them because if I don’t, how can I ask someone
else to?
The Challenges Are Worth It
Don’t get me wrong—this journey isn’t always smooth.
Clinical trials can be physically and emotionally taxing.
There are travel requirements, hours spent at research
sites, and sometimes side effects that make you question
your decision. But in those moments, I remind myself of the
bigger picture. Each blood draw, every test, and even the
uncertainty are steps toward progress. It’s not always fun,
but it’s worth it.
RESEARCH ROUNDUP (continued from page 21)
including the salience of social support, treatment adherence,
and the importance of early interventions for mental health and
substance use disorders. Specialists in mental health, palliative care,
and pain management can be enlisted to improve symptoms and
functioning in PWCF and caregivers at all stages of the transplant
process. Psychological and psychopharmacologic interventions
may require adaptation to target the specific needs of PWCF with
advanced disease.
Diet Habits And Body Composition In People With Cystic
Fibrosis Under Elexacaftor/Tezacaftor/Ivacaftor Treatment
- A Longitudinal, Observational Study
https://tinyurl.com/mr3x52fy
Malnutrition is a significant concern in people with CF. Historically,
nutritional goals have focused on increasing energy intake and body
weight, with less attention to energy sources. This study evaluates
diet habits and body composition in pwCF under elexacaftor/
tezacaftor/ivacaftor (ETI) treatment. This is a longitudinal,
Looking Ahead
As I continue this journey, I feel a deep sense of pride. I’m
proud of myself for stepping up and taking an active role
in my health. I’m proud to be part of something bigger than
myself, contributing to advancements that will benefit not
just me but the entire CF community.
Participating in clinical trials isn’t just about finding a cure or
treatment for my own mutations—it’s about paving the way
for others. It’s about hope, resilience, and the belief that we
can make a difference.
If you’ve ever considered joining a clinical trial, I encourage
you to take that step. It’s not always easy, and it might
feel daunting at times, but the impact you can have is
immeasurable. Together, we can push the boundaries of
what’s possible and bring hope to those who need it most.
observational study in adult pwCF using ETI medications in Western
Norway. The nutritional status in 27 pwCF using ETI treatment
was assessed using dietary assessments and measurements
of anthropometrics, body composition and handgrip strength.
Post-ETI treatment, mean body mass index increased by 1.2 kg/
m2, with more pwCF classified as overweight than underweight.
Few pwCF had fat-free mass index, appendicular skeletal muscle
mass, or handgrip strength below sarcopenia thresholds, and
mean values aligned with general healthy population references.
Dietary intake of saturated fat exceeded the daily recommended
intake. Although weight and BMI improved following ETI treatment,
proactive measures are imperative to address the current trends of
weight gain, elevated FM%, and dietary patterns inconsistent with
recommendations. Close monitoring and interventions to prevent
excessive weight gain and to improve diet quality may become
essential.
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