By Emily Mack
I remember registering for the NFXF International Fragile X Conference for the first time back in 2014 and thinking, is it really worth it? I had heard some anecdotal stories from friends and knew that I would get a lot of information, but in this digital age couldn’t I get the same type of content online?
The registration fees, travel expenses, and time away from work and family made it a tough decision to make. We were just two years post-diagnosis and had already created a small support network in our area, connected with a Fragile X clinic under the direction of Dr. Craig Erickson, and had gotten involved with fundraising efforts to do our part to find a cure. The final push was my desire to learn more, so I registered and booked my flight and hotel.
Right from the start, I knew I made the right decision. Walking into the conference hotel lobby in Anaheim, California, expanded our Fragile X family instantly. The entire hotel was bustling with parents, siblings, self-advocates, clinicians, providers, and more who were impacted by Fragile X, exuding an energy and familiarity to a place I’d never been before. Wearing my lanyard with my name tag attached identified me as a part of this family and brought with it a lot of warm smiles and greetings.
In fact, the International Fragile X Conference is described by many as one of the largest family reunions you can attend. It’s true — everyone there is bonded by our experiences with Fragile X. The best part was that it was the first time where I truly felt like everyone around me just understood, without explanation of who we were, what Fragile X was, and the highs and lows that it can bring to everyday. I met many of my new “extended family members,” trading Fragile X stories that made us feel like someone finally understood us. Outside of the scheduled keynotes, sessions, and panels we were fortunate to interact with older children and adults living with Fragile X, which was one of the greatest parts of the conference. Our son was only five years old at the time, and seeing these kind, happy, young men and women helped us see a brighter future for him.
We attended sessions each day, often dividing and conquering to make the most out of our time there. I’m a note taker, so I had pages and pages to review at the end of each day. To make it even easier, the National Fragile X Foundation made the schedule, presentations, and handouts available through their mobile app. Some of our favorite sessions included topics on behavior, integration and accommodations in school settings, and — most important for us at the time — toileting. Just when we would start to feel overwhelmed with all of the information, the day ended with a dinner out with new friends for a chance to laugh with each other and listen to their stories.
This conference not only gave us a wealth of information and an introduction to our extended Fragile X family, but it also changed our Fragile X journey after one very special interaction. It was at the end of one of the keynote addresses that Brian and Shari Silver walked over to my husband, Greg, and me to say hello. Brian was on the board of directors for NFXF and extended an invitation to join some of the board members and donors at a cocktail reception. We accepted, met some incredibly driven and dedicated members of our Fragile X family, and within minutes we were ready to learn how we could get more involved. The opportunities beyond the conference are vast. My choice was to become part of the board of directors and actively influence the future of this amazing organization that helps us all through community support, awareness and advocacy, and research facilitation efforts.
So, if you are asking yourself, is it worth it? Whether this is your first or your tenth conference, I can say with complete certainty that it truly is worth your time and energy. The conference experience is not something you can find through online research. It rewards you with a reunion with the most incredible family who will support and strengthen you along your own Fragile X journey. I look forward to reconnecting with old friends and meeting a lot of new ones every time. This family reunion wouldn’t be the same without all of us there together.
Thinking about going to the next NFXF International Fragile X Conference?