Manage episode 342894324 series 2842580
What is FD/MAS?
The name of this condition, Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS), can sometimes be confusing. Some people only have affected bones, in which case it might be called FD. When bones and other tissues are affected, it is called MAS. Since both FD and MAS are caused by the exact same gene mutation, and since many people with FD also have other tissues involved, the FD/MAS Alliance and doctors have decided to call it FD/MAS. It is a rare condition caused by a mutation in the gene GNAS. The mutated gene produces a protein, Gs alpha, that is dysfunctional. Gs alpha is a sort of “on/off” switch in cells, and the mutated protein is stuck in the “on” position. Depending on the cell or tissue affected, the “on” switch has a different effect.
Adrienne McBride serves as Executive Director and has 15+ years of working in the nonprofit sector in leadership roles. Her professional experience with the autistic adult community, non-traditional students pursuing higher education, and the chronically homeless have made her a tireless advocate for underserved populations. She is thrilled to work alongside the patients and caregivers of the FD/MAS community to find better answers and better options for all those who suffer from this rare disease. Adrienne received her undergraduate degree in French and Politics from Fairfield University, CT, and her master's degree in business from the University of Maryland.
Anne Corvelle is a parent of a daughter with MAS/PFD. Ann spent over 10 years working in non-profit organizations in Lancaster County, Pennsylvania, currently in fundraising. Besides spending time with her family and working, she is heavily involved in her children’s school and doing whatever work the FD/MAS Alliance asks of her. Ever since her daughter was diagnosed in 2016, she has been on a mission to bring attention to FD/MAS in the hopes of there one day being a treatment or cure for everyone affected by these diseases.
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