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.
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With help and support from my parents, I felt empowered to make my first big decision with my cystic fibrosis care: When to remove my G-tube.
Being diagnosed with chronic lung rejection was devastating. However, maintaining hope and a positive mindset helped me look forward to the future and smile again.
When my daughter was born, her newborn screening indicated that it was unlikely she had CF. But after months of mysterious symptoms, a sweat test confirmed her diagnosis. This unlocked answers not only for my daughter, but for our entire family.
When I lived with advanced lung disease, I never expected to feel good again. But after receiving a double-lung transplant, my whole world changed.
Living with an illness like advanced lung disease can be incredibly isolating and limiting. But I’ve found a way to connect with others and make my own adventures through online gaming.
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
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.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.