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Newsletter Update: Move to Digital Communications

We are proud that we spend our funds responsibly and we constantly consider our services in light of our financial position. As you know, we receive no government funding and rely on generous donations and fundraising. We are grateful for this amazing support which, amongst other things, allows us to maintain our specialist helpline service supporting people with Fragile X, their families and professionals across the UK.

However, as with many charities, we face great funding challenges, which means that we need to reduce our expenditure to maintain our existence. It is with regret that we have decided that the cost of our newsletter for our ever-growing membership is no longer sustainable.

Therefore, the Christmas 2018 issue will be the last printed edition of our newsletter.

However, we are excited to announce that moving forward we will be sending a much more frequent email newsletter, still full of family stories, charity updates and event announcements, information about Fragile X syndrome and services, research opportunities and updates, and much more. You will also be able to access all of this great content here on our website, including printer-friendly versions of these articles which can be downloaded and printed for those who cannot access the internet.

Please make sure you have sent us your email address, so that we can keep you up to date!

We only have email addresses currently for half of our membership. You can update your email by:

  • Emailing

  • Give us a call on 01371875100

  • Complete the membership form

If you are unsure if you have already supplied your email address? please check with us. Better to be safe than sorry!

In the future, you will be able to access emails about our AGMs and elections of trustees on our website at

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