Posted on July 20, 2018
Now that I’ve had several full nights of sleep since the conference ended, I’ve finally had time to reflect on an amazing conference. We made so many beautiful memories there that it seems impossible to pick just a few, but here are my top impressions and favorite moments from the recent NFXF Conference in Cincinnati.
My top impressions
- How the NFXF Tri-State Chapter welcomed us to their beautiful city of Cincinnati. Thank you, Joe Garera, for your leadership and the many volunteers who made this conference so special.
- How grateful members of the Fragile X Community are for the experience of coming together to learn and grow with other families and professionals.
- How genuinely happy people are to see and meet each other whether for the first time or from one conference to the next.
- How nice people are at the conference – even the hotel staff commented on it.
- How incredibly dedicated the professionals who are working in the Fragile X field are about making sure families get the best treatments.
- How much the NFXF staff works to make this conference a valuable experience for all the attendees.
- How hard researchers are working towards discovering effective medications and treatments for all Fragile X-associated disorders.
My favorite moments
- Meeting 8-year-old Natalie Christoff for the first time so she could give me the money she raised with her lemonade stand in honor of her brother Mitchell.
- Attending the Males with FXS panel for the first time and watching these remarkable young men talk honestly (and with a lot of humor) about their lives. Thank you Doug Cooper, Spencer Shelton, Tommy Wolf, and
- Aaron Heisel for sharing your stories with us.
- The jam-packed poster session Friday afternoon. So many exciting projects underway that give us hope for the future.
- Getting an amazing hug from Mouse onstage when I bestowed the NFXF cape to her. Thank you, Paula Fasciano and your mom, for making it!
- The incredibly generous donations made to the NFXF during our live appeal.
- Watching the siblings and self-advocates rehearse their banquet celebration dance routine. All ages and abilities were welcomed and encouraged.
More than anything, however, it was the abundance of love in the air. I know that getting to the conference is not always easy and that even being there can sometimes be a challenge, but it sure felt like people were for the most part, very happy to be part of the Fragile X community.
Despite the challenges that life with Fragile X imposes, we are indeed very fortunate to be together for this unique opportunity because together, we are stronger!
It was wonderful to see so many of you! Thank you for coming!
NFXF Executive Director