Michigan Families Fight for Rare Disease Recognition in Michigan Legislature

PODCAST:

March 24, 2024 ~ There are 1 million Michigan residents who have a rare disease that affects less than 200,000 thousand people, with one of these diseases being Cystic Fibrosis. Laura Bonnell is the founder and CEO of The Bonnell Foundation for Cystic Fibrosis, an organization that provides tools to help people navigate the difficulties of living with CF. The Bonnell Foundation offers education scholarships to those affected by CF, medical assistance, and lung transplant grants. Laura talks about her organization and her work in helping establish a rare disease advisory council in Michigan. Listeners can learn more at TheBonnellFoundation.org.

Emmie Hicks is the mother of two children, Jackie, 8, and Loretta, 6, who both have Leigh‘s disease, a rare and severe neurological disorder that typically means a shortened life expectancy for those who have it. Hicks discusses the difficulties she’s had in getting treatment and other services for her children.