How to Stride — Virtual
The Sibling & Self-Advocate Network hosts monthly virtual sessions via Zoom. They hosted two sessions during Fragile X Awareness Month with the theme of “How to Stride.”
In the first event, sibling Ashlyn Southard, a nature occupational therapist, led the group in how to use their senses to get the most out of their experience during a walk or hike! After Ashlyn’s talk, everyone had the chance to share and discuss. Thank you, Ashlyn!
In the second event, Heather Crosby, a Pilates instructor and mom of individuals living with Fragile X, invited attendees into her studio over Zoom to demonstrate how Pilates can be for everybody. Thank you, Heather!
SSAN member Diane Southard shared, “It was great hearing how people decided to Stride in July. What a great time catching up with our siblings and self-advocates!”
Interested in joining future events? Information is posted on Facebook, NFXF Sibling & Self Advocate Network (SSAN). It’s a private group so you’ll need to ask to join, or you can email SibSelfrl@fragilex.org for more details.
Thank you to Diane Southard, Kelley Dunphy, and Dillon Kelley for organizing and hosting these virtual events to provide opportunities for siblings and self-advocates in 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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Advocacy Day Social Story
Our own Jayne Dixon Weber pulled together a social story to use to help you and your self-advocate prepare for the NFXF Advocacy Day on February 24, 2021.
What are Federal Budgets and Why They Matter
What is the President's budget, is it important for Fragile X advocacy, and how does Fragile X research get funded? These are all answered here.