For those of us who can’t take modulators, it can sometimes feel like you’ve been left behind. But I have found hope and motivation by participating in clinical trials.
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This year’s program marked the largest in-person advocacy event in the Foundation’s history.
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.
The CF community supported me so much during my two double-lung transplants, so I’m eager and excited to give back. One of the ways I got involved was by becoming a mentor, which is how I formed an incredible bond with my friend, Brittani.
As cystic fibrosis damaged my lungs, I did all I could to make it to my university graduation before I underwent lung transplant.
When I started coughing up blood, letting my care team know helped me handle it the next time.
Hearing from diverse voices is critical as we continue our journey to listen, learn, and take action against racism and discrimination.
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.
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.