By Robby Miller

This year the National Fragile X Foundation is celebrating its 40th anniversary! It’s hard to believe we have already spent 40 years serving the Fragile X community -families living with Fragile X, their loved ones, and professionals alike- and I think I speak for our entire team when I say we look forward to serving the community for the next 40 years (and more!). As a tribute to the organization’s rich history, we are cataloging our journey in monthly blog posts. We have so many people and institutions in our history it’s hard to capture them all, but we will certainly do our best. Join us as we walk down memory lane, memorializing how the National Fragile X Foundation got to where we are today so we can dream together of the brightest possible tomorrow.

– Hilary Rosselot

In last month’s blog post we talked about how the NFXF has, since its creation 40 years ago, communicated with the worldwide Fragile X community. Without question, one of the most impactful ways has been through its international conferences – the 19th of which is soon to occur!

Why have our conferences had such a profound impact?

  1. Most professionals working in the Fragile X field have attended at least one of our conferences, if not multiple ones, leading to the kind of networking that can only take place in face-to-face encounters;
  2. For those families who have been able to attend, the experience has often been – in their own words – life altering, as they met other parents and caregivers of children of all ages, shared their respective journeys, and learned from one another;
  3. The content generated from the conference presentations has significantly added to the resources that the NFXF makes available to the world.

In the early years, attendance was considered great if a few hundred parents, other family members and professionals showed up. Nowadays, three to four times that number is the norm!

Conference Timeline

Stories About Past Conferences

The massive undertaking that the NFXF undertakes every two years, while daunting for the staff, pays off in so many ways, but this post about our conferences wouldn’t be complete without a few humorous stories about past conferences.

For example, there was the time the conference hotel contacted the NFXF just a few months out from the scheduled start to inform us that they had decided to begin major renovations during our event, but that we shouldn’t worry. – True, the restaurants, the pool, the store and gift shop and many other amenities that one takes for granted when staying at a major hotel would be out of action – but they were sure that our event would not be impacted. Ha! – They weren’t anticipating what the lawyers on the board of directors had in store for them and when all was said and done not only did the original hotel find a new hotel for us, but they also wrote a big check to the Foundation for all the trouble they had caused.

Or how about the time, at another big city hotel, that errant children from the volunteer-staffed childcare pulled the hotel’s fire alarm – TWICE! – requiring the entire hotel to be evacuated. I’m sure the hotel management was thrilled for our conference to end. (Ever since that episode, the NFXF has used the services of a professionally staffed childcare firm.)

Here is a list of the years and cities where the NFXF’s conferences have taken place:

1987, 88, 89 – Denver, Colorado;   1992 Snowmass, Colorado;   1994 – Albuquerque, New Mexico;   1996 – Portland, Oregon;   1998 – Ashville, North Carolina;   2000 – Los Angeles, California;   2002 – Chicago, Illinois;   2004 – Washington, DC;   2006 – Atlanta, Georgia;   2008 – St. Louis, Missouri;   2010 – Detroit, Michigan;   2012 – Miami, Florida;   2014 – Anaheim, California;   2016 – San Antonio, Texas;   2018 – Cincinnati, Ohio;   2020 – an online/virtual event;   2022 – San Diego, California; and coming this year, – Orlando, Florida.

Who knows, maybe your town or part of the country will be next!

Author Robby Miller

Robby Miller
Robby has spent over 50 years helping children with special needs, their families, and the professionals who work with them. Robby is particularly interested in how families learn about, access, and receive meaningful services from competent professionals, organizations, and institutions. This interest led to his co-founding the Fragile X Clinical & Research Consortium, also known as FXCRC. In his spare time, you’ll find Robby singing and playing rhythm guitar in a rock band with his pals.