National Fragile X Foundation
In the months to come, the NFXF will continue to roll out the latest information from the 13th International Fragile X Conference. This was not just an event for those who were able to join us in Miami last July, it was also an event designed to benefit the greater Fragile X community of families and professionals. The recent updates of our Online Knowledge Center and the online availability of the 2012 Keynote Presentations are just two examples.
So what did we learn in Miami? Here are just a few of my observations:
- We learned that the Fragile X community is as vibrant as ever – probably more so. With the growing awareness about all Fragile X-associated Disorders, and our ever-expanding groups and FXCRC clinics (not to mention the FX community on Facebook and twitter!) there is more opportunity for connectedness, sharing, guidance, suggestions, recommendations, referrals and plain, ol’ caring. The community may have gotten a boost from the conference, but, unlike prior decades, no one has to wait two years for another dose.
- We learned that the pharmaceutical companies are in for the long haul and making a concerted effort to learn about and better understand the needs of families. They are committed to the clinical trials process moving forward expeditiously.
- We learned that adults with Fragile X syndrome are, more than ever, capable of leading meaningful and productive lives, but that many challenges remain.
- We learned that scientists continue to increasingly understand the mechanism that causes FXTAS and that clinicians are increasingly able to provide guidance and useful advice to patients and their family caregivers.
- We learned that there is much to be optimistic about, that being hopeful is a reasonable reaction to the news about Fragile X and that no one – ever – need be alone in the Fragile X community.