Rachael Bloom
Executive Director & Founding Trustee
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
As Executive Director of RSRT UK, Rachael has responsibility for implementing the charity’s strategic priorities and for the day-to-day running of the organisation, including communications, fundraising and administration.
Rachael’s interest in Rett research began when her daughter, Amber was diagnosed with Rett syndrome eleven years ago. While she was fascinated by the ever-moving scientific progress over the course of Amber's life; the identification of MECP2, the development of the mouse model and the subsequent reversal of symptoms in 2007, as Amber moved into her teen years, Rachael became frustrated that research might not be happening fast enough to bring about a cure in Amber's lifetime. Rachael was convinced that parents must take an active role in driving the research to its ultimate conclusion – the reversal of Rett not just in mice but in girls and women living with the condition. She now supports and encourages hundreds of families across the UK to raise funds in a wide variety of ways.
Prior to spearheading the launch of RSRT UK in 2010, Rachael wrote a novel (unpublishable) and obtained an MA with Distinction in Creative Writing from Bath Spa University. She spent five years living in the USA, where she worked as an advocate for children with disabilities.
Rachael currently serves on the Just Giving Strategic Advisory Board for small to medium size charities.
'My daughter was diagnosed with Rett at the age of five after a fairly late onset. Since then, I have watched her health deteriorate; watched her lose her mobility step by gruelling step. I can see that a cure for Rett Syndrome is possible and I don't want to wait. I want to go out and meet it head on, to find ways to speed the science and see treatment delivered for my daughter, in her lifetime.'
In from the Cold-article in Special Educational Needs Magazine
Interview in the Clare Foundation Newsletter
Holding out for twenty-five-A short video about some of the difficulties of living with Rett and the potential for treatment