My Patient Story
Diseases
Rare Disease
Issues and Challenges
Jenn has encountered: Geography, Medical Discrimination
My Story
https://www.massbio.org/news/recent-news/not-worth-less/
In a nutshell, we fought for 6 years for a drug approval for duchenne MD, and now, I have exhausted all avenues for Max to receive masshealth coverage of either of his only two approved therapies, Exondys51 and Emflaza.
My Motivation and Inspiration
My 4 children. Austin 21, Max 18, James 13 and Norah 9, and all others who live with or love someone with a rare disease.
Austin and Max live with duchenne, James lives with congenital cholesteatoma and primary immune deficiency.
Share This Story
Share on facebook
Share on twitter
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.