Running the X for Fragile X

The GoFundMe link is now live, and we have received €1430 EUR into our account. This amount will make a real difference. We have a few part-time

contracted staff but otherwise rely on volunteers. This money will help us keep

momentum with the projects we are working on, supported by our research and

admin contractors.

Currently we have someone helping us write information for the About Fragile X

section of our website, so that up-to-date scientific information is available in lay-

language for families around the world to access. This is a project we hope to be

able to publish live online by the end of the summer.

We are also working on the first global Fragile X Clinical Guidelines, with 35+

clinicians and researchers supporting this work. The project is ground-breaking when

it comes to families having certified information to request the appropriate clinical

help and support in their country. The project is being coordinated with ERN-ITHACA

and will be published on their site as European-approved Guidelines, as well as on

our website.

Thank you for your willingness to share your own family’s journey with fragile X. This

candour and openness helps other families. We are always learning from each other,

and shared experiences are encouraging.

Are you in touch with the Dutch Fragile X Association? I can give you an

introduction over email if that would be useful.

Good luck in the next stages of this mammoth challenge. I hope training and the

races go well.

With best wishes,

Dr. Kirsten Johnson, FRSA

Chair, Board of Directors (volunteer)

Fragile X International aisbl