Finding a Cure for Fragile X
In the first week of March I attended my first Fragile X Advocacy Day to meet with many of the Massachusetts delegation to Congress. While this was my first time advocating for Fragile X research, I’ve been a longtime lung cancer research advocate and have met with many of the same representatives in the past. It was a pleasure to meet with many of the families as my participation in Advocacy Day was in the spirit of “we are all in this together”.
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Twenty-two is a terrifying birthday for the parent of a child with Fragile X Syndrome. It marks the end of formal schooling. We were daunted by this transition. Our son, Ryan, had been attending a residential school, New England Center for Children, for the previous 12 years. For almost all his waking hours, Ryan had one-on-one staffing and five additional staff nearby in case of behavioral outbursts. On community outings he was usually accompanied by at least three staff members. Now we were about to move him to Shared Living Collaborative (SLC) where he would have just one-to-one daytime staffing and two-to-one staffing in his residential placement, with no immediate, additional staff for help during a behavioral incident. We were tense and on edge about how this new arrangement would work. Rocky Beginnings This placement did not start out well. SLC seriously questioned whether Ryan could continue in the program. We approached a crisis point at SLC,
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FRAXA Research Foundation is fortunate to attract volunteers and interns from universities far and wide. FRAXA has just four staff on the payroll (three of whom are part time), to keep expenses low and devote your donations to Fragile X research. That also means we are very grateful to our volunteers! This past summer we were joined at the FRAXA Newburyport, MA office by Emily Fluet, a student who had completed her freshman year at the University of St. Andrews in Scotland. Emily has transformed two FRAXA publications into online resources available to all: Fragile X – A to Z and Medication Guide for Fragile X. My summer at FRAXA Research Foundation by Emily Fluet 9/1/2015 Many of my friends went on gap years last year, and hearing about their volunteering and service really inspired me: I wanted to do something to help out others as well. So I started researching nonprofits and was drawn to
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