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...
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...
by Guest Author | Mar 4, 2025 | News, Speaking, Uncategorized
February was a busy month for the rare disease community (a disease/disorder community is considered rare if there are fewer than 200,000 people). Bonnell Foundation CEO, Laura Bonnell was the keynote speaker at the 2025 Rare Disease Day Gathering: bridging the gaps. ...
