Resources for Families: Fragile X – A to Z and Medication Guide

emilyfluetFRAXA 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


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 FRAXA. My mother serves as a Director of Policy at the Massachusetts Department of Mental Health, and so mental health is something around which I’ve grown up, and it has become an issue close to my heart. Therefore, I was so pleased when FRAXA president Katie Clapp answered my email saying that they were interested in me as an intern!

I could not have asked for a better summer or a warmer welcome. Everyone in the office was so kind and willing to answer my (many!) questions as I went about the projects Katie gave me. My two main tasks were the Fragile X – A to Z Guide For Parents, By Parents, and the Medication guide. For the A to Z guide, I reorganized, edited, and updated the list of resources. I formatted the medication guide for the website. They were very interesting projects that delved into two completely different aspects of dealing with Fragile X Syndrome: living and behavioral tips, and the science behind treatment.

It meant so much to me to see that the work I was doing was helping real families: when I made a Facebook post about the A to Z guide, I was astounded to see the number of people it reached! I was so happy to be involved with FRAXA this summer, for I learned so much about working in an office and about Fragile X Syndrome. It gave me a new appreciation for the work my mother does, and for those dealing with developmental disorders and their families.

Thank you for allowing me to be a part of this great organization and community!