To the moms of children with CF who feel isolated in their journey — you are not alone. This is my letter to you, from someone who understands.
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The physical and emotional toll of CF can sometimes make me feel isolated from my peers. But I’ve learned being vulnerable about my struggles can create stronger relationships that make me feel supported and loved.
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.
Funding will support a Phase 2b trial of phage therapy for chronic Pseudomonas aeruginosa lung infections.
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.
In a letter to the House Energy & Commerce Health Subcommittee, the Foundation joins a cohort of patient organizations to stress the importance of addressing antimicrobial resistance and prioritize the passage of the PASTEUR Act.
In a letter to the House Energy & Commerce Committee, the Cystic Fibrosis Foundation states its support for legislation that addresses antimicrobial resistance, orphan drug exclusivity, and access to specialized care across state lines.