My Nonprofit Reviews

I am a childhood friend of Marie Duggan's so when my precious grandson Ethan was diagnosed in January 2016 with Phelan McDermid Syndrome (at age 5 months) I contacted her for support. Phelan McDermid (also known as 22 q 13, after the chromosome area that is deleted) is a genetic syndrome that includes hypotonia, absent speech and likely autism (95%). Possibly 1% of Autistic people are Phelan McDermid (and may have just not had genetic testing), since it was only "discovered" in 1988. At any rate, I knew Marie had experience with Autism because we grew up together in Boston. (In fact, when my daughter was 9, she had a TAN fundraiser birthday party, at which Marie supplied puzzle piece necklaces for favors!) I knew she was a fierce advocate who took on the city of Boston, getting very politically active and generating some major changes. Because of her paving the way since the 1980's, newly diagnosed families have so much more support! Marie immediately offered suggestions from how to contact the DMR, what social services which were available, personal emotional support and encouragement, and an IPAD loaded with TAN's communication app. She encouraged us to attend the Phelan McDermid Syndrome Foundation family conference, which we did. It was the first time since receiving the diagnosis that I felt we would all be ok with this devastating (at the time) news. Since January, Marie & I have been in touch via Facebook and in person, she is deeply commited to helping each child as if it were her own.