Rachael Stevenson

Founder & Executive Director, Reverse Rett UK

Rachael has a teenaged daughter, Amber, who was diagnosed with Rett in July 2000. At that time, internet searches for treatments and cures for Rett Syndrome turned up one sentence and one sentence only; ‘there is no treatment for Rett Syndrome.’ Devastated by her daughter’s prognosis, Rachael focused on implementing those therapies that were available, keeping Amber as well as she could and giving her the best life possible, but by her early teens, Amber began to struggle with Rett symptoms across the board.

In 2009, two years after the reversal experiments of 2007, Rachael became frustrated that research developments weren’t happening fast enough to make a difference for Amber and she spearheaded the launch of Rett Syndrome Research Trust UK (now called Reverse Rett) from her kitchen counter. Prior to founding Rett Syndrome Research Trust UK, Rachael wrote a novel (unpublished) and obtained an MA with Distinction in Creative Writing from Bath Spa University.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.

Since the launch of Reverse Rett in July 2010, the organization has delivered in excess of $4 million in support of RSRT’s research portfolio. As Executive Director, Rachael is responsible for implementing the charity’s strategic priorities and for the day-to-day running of the organisation, including communications, fundraising and administration and leading a strong community of determined fundraisers and supporters, in raising vital research funds that will drive the science forward.

Rachael is an active member of the Patient Engagment Group at Genetic Alliance UK who are working to impact the implementation of the UK Strategy for Rare Diseases and also represents Reverse Rett as a member of the Patient Involvement Group at NICE. She has served on the Just Giving Advisory Board for small to medium charities since 2012.

Under Rachael’s leadership, the charity has won two awards, the Charity Times Award’s Best New Charity 2011 and the Just Giving Award’s Best New Charity 2012.

Rachael was a Finalist in the Inspiring Women’s Awards 2015.

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