Fragile X on the Farm | June 3, 2023
Hosted by members of the former Maryland Fragile X Resource Group
The Fragile X on the Farm fundraising event originally started as an idea to host a reunion for families in the Maryland area; it soon blossomed into an event that brought together Fragile X families in Maryland, friends, researchers, and the National Fragile X Foundation. The success of the event was a result of the collective effort of many of the Maryland Fragile X families pooling their resources, and commitment by outside supportive sponsors, like Crown Rose Estate.
Dr. Randi Hagerman speaking about the history of the National Fragile X Foundation and the exciting developments in Fragile X research.
Wen Huang, Mom of a son with Fragile X, shared her family’s story and the hope they have for the future of Fragile X.
Says parent organizer and NFXF Board Member, Tamaro Hudson, “I am grateful that we allowed the vision of the event to organically develop into something that we will forever be cherished. We had enormous fun socializing while participating in games, picture taking and whisky tasting during the social hour, along with listening to the wonderful Wootton High School live jazz band that played throughout the evening. This allowed the guests and many of the families to relax and just let their hair down as we prepared ourselves for a night of singing, testimonies, and presentations.”
Although there were a few technical difficulties with A/V equipment, the team was able to overcome and cherish the evening. The evening’s program opened and closed with song by Sherron ‘Sissi’ Sutton and Destiny Lawler. Tamaro’s son, Elijah, sang along to each song, sharing his joy of music with the attendees. There were several presentations in between songs from:
- Hilary Rosselot, the Executive Director of the National Fragile X Foundation
- Wen Huang and Ingrid Bell, parents of children with Fragile X syndrome
- Drs. Paul and Randi Hagerman, Professors at the University of California, David MIND Institute
Hilary shared about the NFXF’s mission and the “who, what, why, and how” of the Foundation’s work. Parents, Wen Huang and Ingrid Bell shared about their experiences with Fragile X and their hope for the future, both specifically citing their excitement about the advancement of clinical trials. Dr. Paul Hagerman summarized the genetics of Fragile X and the exciting opportunities ahead, like gene therapy. And finally, Dr. Randi Hagerman shared the history of the National Fragile X Foundation (she is a co-founder of the NFXF!), her thoughts on the progress of treatment of Fragile X, and what the future holds.
Joy was evident in the smiling faces of families who attended. Thanks to all who attended Fragile X on the Farm and supported with your donations. Together, you raised $13,709 in support of the National Fragile X Foundation!
And, thank you, Tamaro, for coming up with the idea to organize such a fun and successful reunion event!
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Fragile X on the Farm
Thank you to members of the former Maryland Fragile X Resource Group for hosting a reunion, dinner on the farm, and fundraiser in support of the NFXF!