Framingham Glenda Thomas Myasthenia gravis state rare disease board


FRAMINGHAM — Advocating for those diagnosed with Myasthenia gravis has been a passion for Glenda Thomas for several years.

Thomas, who was diagnosed with the rare autoimmune neuromuscular disorder that affects the voluntary muscular groups seven years ago, has been a keynote speaker at conferences, collaborated with pharmaceutical companies and is a Myasthenia gravis support group leader, fundraiser and conference planner.

All of which she never expected to do just a handful of years ago.

Framingham resident Glenda Thomas is pictured with a proclamation from Gov. Charlie Baker for Myasthenia Gravis Awareness Month. She was recently appointed to the Massachusetts Rare Disease Advisory Council, one of two patient representatives on the board.

The Framingham resident recently added another title to her ever-growing resume. Thomas was recently appointed to the newly formed Rare Disease Advisory Council of Massachusetts.

“It’s just a very rewarding feeling,” said Thomas, a member of the city’s Council on Aging board.

Thomas learned about the council — which will provide guidance and assistance to local, state and federal legislators and policy makers to ensure patient perspectives and needs are central to policy changes that affect solutions for rare disease — through her pharmaceutical contacts. She initially thought it would be a long shot for her to be chosen, but thought it couldn’t hurt to try.

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