Voices Across America

My Patient Story

Jenn

State: Massachusetts
Congressional District: MA06

Diseases

Rare Disease

Issues and Challenges

Jenn has encountered: Rare / Underserved Disease, 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.

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