We are delighted to welcome, Oly Freeman to the board of Trustees at Reverse Rett. Oly is dad to Alfie, who has MECP2 Duplication syndrome (MDS)
We are delighted to welcome, Oly Freeman to the board of Trustees at Reverse Rett. Oly is dad to Alfie, who has MECP2 Duplication syndrome.
MECP2 Duplication Syndrome is caused by the same gene as Rett syndrome. In Rett syndrome, there are mutations or deletions in the MECP2 gene, whereas in MECP2 Duplication syndrome, the gene is mistakenly duplicated or in some cases triplicated.
For more than 10 years, funds raised by UK MDS families in honour of their loved ones have been delivered to Cure MDS formerly the 401 Project via Reverse Rett.
After the epic fundraising efforts of Jenny Howe, who single handedly kick started MDS fundraising in the UK, the MDS fundraising baton has now been picked up by Oly, his wife, Katie and other UK MDS families.
We look forward to working alongside Oly and the other UK families to raise the profile of Cure MDS UK and to support the implementation of UK MDS clinical trials.
Oly said “Our family was first supported by Reverse Rett in 2018, soon after our eldest son Alfie was diagnosed with MECP2 Duplication Syndrome at 6 weeks old.
I’ve watched with admiration, the achievements of Reverse Rett and the Rett community within the UK in the quest for transformational clinical trials.
Although fewer in number, I’m proud to be a part of a group of highly motivated families and their friends, whose loved ones have been diagnosed with MDS or other related MECP2 disorders, working just as hard to reach that same goal.
It’s a huge privilege to be appointed to the board of trustees of Reverse Rett. I hope to represent the MDS & related disorders within the charity and support the ongoing work of Reverse Rett as we all strive for life changing treatments for our loved ones.”
Rachael Stevenson CEO of Reverse Rett says:
“We are delighted to welcome Oly to the board of Reverse Rett. Although MDS and Rett syndrome are two distinct disorders, they are caused by problems in the same gene. Children and young people with MDS also struggle with many of the same symptoms as those with Rett syndrome but sadly the prognosis in terms of longevity is worse. Bringing Oly onto the Board at Reverse Rett concretes our longstanding commitment to supporting the efforts of MDS families in the UK and providing the necessary infrastructure, resource and capacity to deliver disease-modifying treatments to children and young people with MDS as quickly as possible.”