Excitement and disappointment.

In July, in Miami, there is this little shindig planned. I think you may have heard of it, it’s the International Fragile X Conference.

If you are new to the fragile X world, it is pretty much the place to be as a parent of a child with fragile X. It’s five intense days of presentations on just about any aspect of fragile X that you can imagine and it happens every two years. The top researchers are there discussing their work, fragile X experts are there sharing tips and best practices and parents are there sharing…pretty much everything. There is a lot of learning and a lot of fun to be experienced.

If you’ve been newly diagnosed, don’t worry if you’re not ready to go just yet. We skipped the first two after our diagnosis and I nearly had to beat poor Eric to death ((Lovingly, of course.)) to get him to go in 2010. It is mentally and emotionally exhausting and, yet, oddly rejuvenating. When the time is right for you, you will be amazed by what you can get out of the experience. You will most likely move heaven and earth to be sure to attend every one after that as well.

That said…it’s not cheap. The registration fees are expensive then you have flights and hotels and food…it adds up really, really fast. One of the many terrific things that the National Fragile X Foundation does is offer scholarships to cover the cost of the registration fees to help ease some of the expense. BUT, they can only give back what has been given to them and when they have more need than funds…they have to make really difficult decisions.

The scholarship fund this year received an unprecedented number of requests, the Foundation was forced to close the application period early because they far exceeded the funds available. When you have been in a position for many, many years to say “yes” to everyone who asked, it’s very disappointing to find yourself having to say “no” to so many families. When you, as a family member, need that help in order to attend to learn what you can to help your child, it’s heartbreaking, I’m sure, to be told “no.”

I feel like a dipship for not doing this earlier but I guess I didn’t really understand what this fund meant to people, what the hope of going to the conference gave to people until I saw the reactions. So, I’m on a crusade. The early registration period for the conference ends May 15th and then the costs start to escalate. Between now and then I’m going to ask you all, FX related or not, to donate to the scholarship fund and turn some of those “no”  responses into “yes'” responses. Eric and I, through the LINKS group, are funding two more.

Donate directly to the NFXF (it’s tax deductible!) by going here:

Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.

6 thoughts on “Excitement and disappointment.

  • April 6, 2012 at 11:46 am

    thank you for (1) explaining and (2) posting so (3) others can share, too!

  • April 6, 2012 at 10:08 pm

    I very much appreciate this post (well, frankly I love and appreciate all your posts…). My husband I were hoping to make it this year but cannot because of the cost… there is always next time! 🙂 Hopefully many will be helped by the generosity of others.

  • April 11, 2012 at 11:18 am

    Thank you all for the love 🙂 People are donating! I really hope we can get everyone on the waiting list a scholarship…


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