This year’s program marked the largest in-person advocacy event in the Foundation’s history.
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Take it from me, dating with cystic fibrosis can be hard — from not having the energy to keep up with our partners to dealing with all the not-so-sexy aspects of the disease. But it’s important to not settle for anything less than the love and support we deserve.
Living with CF means I quickly became familiar with the patient side of the health care field. My experiences in the hospital have motivated me to become the kind of nurse that listens to and advocates for their patients.
When I started coughing up blood, letting my care team know helped me handle it the next time.
The additional funding will support a Phase 2 clinical trial for an inhaled antisense oligonucleotide drug for people with cystic fibrosis who have the splicing mutation 3849+10Kb C-to-T.
Having an atypical presentation of CF means I stand somewhere between the CF world and the rest of the world — and that makes me feel like I belong in neither.
Revised approach to lung function reporting is shown to be more scientifically accurate and may reduce health disparities.
Long-standing volunteers Kate O’Donnell and Amy Barry to co-chair major gift and planned giving campaign, continuing the legacy of beloved philanthropic leader Joe O’Donnell
Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.
I was recently reminded of what my life used to be like before Trikafta® — and I immediately felt guilty for forgetting. But maybe it’s OK to let go of the past and embrace a future of hope.