Lexi Pappas, Advocate, FSHD
Lexi Pappas is an advocate for and is also diagnosed with FSHD, a type of Muscular Dystrophy. When she was first diagnosed she would hide her symptoms from friends and classmates, but as things progressed, she decided to open up and start spreading awareness about it. In 2016 she released a documentary sharing how her family lives with FSHD daily, and the struggles that come along with it. The documentary now has over 45,000 views on YouTube and was featured on Fox news Boston and many other sites. Since then, she has spoken in front of the FDA and NIH, collaborated with multiple research companies, created YouTube videos, held fundraisers, and made relationships with others living with FSHD along the way. When we are all in a room together, it no longer feels like a rare disease and that is what makes those connections so special. In daily life, Lexi is a video editor and producer at Dell Technologies, and volunteers her time editing videos for non-profit organizations.