Family Pool Party – Bloomfield, Conn.
The NFXF Connecticut Chapter was excited to host a family pool party on August 13, 2023, at the JCC Swim and Tennis Club. Families came from Connecticut, Rhode Island, and Massachusetts. Ranging in age from 2 to 92, guests enjoyed perfect weather, fun pool activities (basketball, water slide, and diving board), good food, and great connections. Everyone enjoyed meeting other families for the first time and reconnecting with old friends.
Tammy and Andy Selinger shared how they helped to bring Fragile X awareness to club members who were also enjoying the pool by putting up a banner and placing Fragile X info sheets at the check-in for all entering the club to see.
Thank you to Tammy and Andy Selinger for organizing and hosting this local event to provide opportunities for the Fragile X community to connect!
Moms and Siblings & Self-Advocates Night Out — Farmington, Conn.
The NFXF Western Massachusetts and Connecticut chapters along with the Sibling & Self-Advocate Network organized an evening out on September 28, 2023. It was an evening filled with casual conversations on many topics, sharing successes and discussing challenges and strategies. The group welcomed back many familiar faces as well as a parent who attended for the first time.
Thank you to the chapters and the SSAN for providing opportunities for families impacted by Fragile X to connect with others in the community!
about
Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.
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DOD grant awarded for a FXTAS trial
PureTech Health has been awarded a DOD grant of up to $11.4 million from the DOD for their trial of LYT-300, oral formulation of allopregnanolone, in people with Fragile X-associated tremor/ataxia syndrome (FXTAS).
A Reflection on the CEO Commission’s 2023 Hill Day
NFXF Board Member Jed Seifert recently represented the NFXF at the CEO Commission's Hill Day. Jed shares his reflections on this powerful experience.