Cork & Cafe — Hadley, Mass.
On September 24, 2023, the NFXF Western Massachusetts Chapter held its 10th Cork & Cafe wine-tasting and fundraising event. Nearly 60 people attended this year!
Guests enjoyed appetizers, wine tasting with 70 different wines, and a silent auction of 25 generously donated items, including gift cards to Pizza Oven and a bike! All attendees who bought tickets online were included in a drawing for five donated prizes. Guests appreciated the chance to connect with other families who are living with Fragile X-associated conditions, as well as those who have been ongoing active community members.
Denise Devine shared her appreciation for the business owner, Sean Barry, who set up the distributors that poured the wine. “Sean has been instrumental in the success of this event!”
Thank you to Denise Devine, Sean Barry, volunteers, attendees, and donors for your long-standing support of the NFXF and the Fragile X community!
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!
Autism Connections Conference — Springfield, Mass.
The NFXF Western Massachusetts chapter hosted a table at a local Autism Connections Conference on April 27, 2023. Denise Devine attended and provided informational flyers on the relationship between Fragile X and autism. She spoke with professionals, families, and attendees about the NFXF Western Massachusetts Chapter, discussing Fragile X and possibly testing for Fragile X with their primary healthcare providers.
Thank you to the NFXF Western Massachusetts Chapter for helping inform the community and promote awareness about Fragile X!
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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In-District Advocacy Opportunity with Rare Disease Legislative Advocates
It's that time of year! Join other rare disease advocates for in-district meetings with your Congress members and staff. You can help represent the Fragile X community!
The ABLE Employment Flexibility Act
The ABLE Employment Flexibility Act (H.R. 4672) permits employers to contribute to an employee’s ABLE account instead of a 401(k) – including an employer’s match. By saving it in the ABLE account it will not adversely affect most means-tested federal benefits.