by Guest Author | Mar 24, 2025 | Podcasts
I love that I was able to bump into Aaron Trumm via an email. He reached out to check in about our scholarship program for college. We only award grants to undergrad students, but I was intrigued by all I learned about him. Aaron has CF, he is post-transplant, he...
by Guest Author | Mar 10, 2025 | Podcasts, Uncategorized
CF Dad Bob Coughlin see’s a cure in the future for his son, and all of our kids. His high energy in this podcast is contagious. In this conversation, Laura Bonnell and Bob Coughlin discuss the journey of Bob’s son, Bobby, who has cystic fibrosis. They...
by Guest Author | Mar 4, 2025 | Media/Press, News
Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.I am Laura Bonnell, the mother of two daughters with cystic fibrosis....
by Guest Author | Mar 4, 2025 | Media/Press, News, Uncategorized
Representative Jason Morgan reintroduced the Rare Disease Advisory Council (RDAC). See the press release: Morgan Reintroducing Bill Creating Rare Disease Advisory Council –...
by Guest Author | Mar 4, 2025 | News, Uncategorized
Hundreds of advocates (caregivers and patients) gathered in Washington, D.C. to make their voices heard regarding Federal legislation. Our message: support bills that impact the rare disease community. Laura is pictured here with Siri Vaeth who is the Executive...
