Merry Christmas & A Happy New Year!

We would like to take this opportunity of wishing you and your family a happy, healthy and peaceful Christmas and New Year.

As we approach the end of another year it’s great to look back and reflect on the highlights at Rett UK. Activities and events that have been made possible with your support and engagement.

January: Henry Smith Foundation confirm a 3 year grant of £20K p.a to support our core helpline service.

February: Gemma Turner joins Rett UK team as a part time fundraiser.

March: Trustees away day planning for the future; renewed purpose, vision and strategic aims written.

April: Regional Roadshow in Belfast welcomes families from both sides of the border providing much needed support, information and advice.

June: New communication support and training project launched with Callie Ward.

July: First two day communication training event held in Surrey and very well received by families and professionals. Becky picks up cheque for over £10K from The Banstead May Queen Event. 2nd Regional Roadshow of the year in Newcastle.

September: Parallel London event sees 10 families taking part in the second inclusive festival at the Queen Elizabeth Olympic Park.

October: Global Rett Awareness Month launched with Masquerade Ball raising over £10K and new communication resource booklet published. 3rd Regional Roadshow of the year in Surrey with over 20 professionals attending the Friday pm event.

November: Becky Jenner, Hilary Truss and Callie Ward attend the European Rett Syndrome Congress in Berlin making new contacts and bringing back lots of information to share with families.

December: Rett Disorders Working Group meet to plan Health Checklist for publication Spring 2018. Big Give raises over £11K for new project next year: Rett Syndrome and The Black Dog.

In 2018, we shall be continuing to develop our regional work including local support groups and the parent to parent contact network. We will be taking the roadshow to The South West, Wales and the Midlands. We have more training and support events planned as part of the communication project as well as more resources to add to the web site that will help you on your communication journey.

We are also excited to see the work of the Rett Disorders Alliance progress. The recent meeting in London which was well attended by experienced professionals has laid the foundations to produce a health checklist for people with Rett syndrome which can be used by families to give to health care professionals; identifying the comorbidities that occur with Rett syndrome, what action can be take or who to refer to plus a section on further reading. We hope this will be followed by more comprehensive best practice guidelines in the not too distant future.

On behalf of all our families, thanks again for supporting us this year; it really has made a difference. One family recently told us;

‘Rett UK are simply brilliant at being there for Rett families and those professionals involved with the families.’