For other resources, please visit the pages below.
The MECP2 Duplication Syndrome Family Talk Facebook Group on FACEBOOK connects more than 600 family members of children and adults with MECP2 Duplication Syndrome from around the world. Family members share practical information and engage in mutual support. Facebook members can find the group at https://www.facebook.com/groups/mecp2families/ and then select: "Join Group" Look for a follow-up Facebook message within a few days asking to confirm that you are a family member.
The Van Wright Foundation
The Van Wright Foundation is a non-for-profit charity established in March 2012, by Collene and Phil Wright, the parents of Van Wright. In November 2011 at 15 months of age, Van was diagnosed with MECP2 duplication syndrome.
Their focus is to raise funds for research into a cure or treatment for MECP2 duplication syndrome.
They have established a relationship with Monica Coenraads, Executive Director of Rett Syndrome Research Trust in the USA www.rsrt.org, who is the primary beneficiary for their fundraising efforts.
The Blake McMillan Trust
Initially, The Blake McMillan Trust was set up to help Blake with any additional needs he would face in his life (therapies, treatment, equipment, etc.). They planned to just raise a relatively small amount but their city, Dundee, all fell in love with Blake and everyone was determined to raise money for him.
In December 2012, around 5 months after they started the Trust, Jenny McMillan became aware that research WAS being done into MeCP2 Duplication Syndrome, despite being told by their Geneticist that there was no hope!
From that day forward, Jenny has become determined to raise money for research and make a difference to the future of MeCP2 Duplication Syndrome.
She keeps a small amount in Blake's trust fund which she will use for any additional support he may need throughout his life, but the majority of the funds raised goes directly to the MeCP2 Duplication Fund at RSRT… a charity she has such respect for.
They are very proud to have been able to donate a huge amount of funds to research which is going to make a difference to sufferers of this condition.
They have a facebook page which they use to update followers on Blake's progress and any info Jenny has on MeCP2 Duplication Syndrome or research.
Jenny’s facebook page:
And here is the UK page for RSRT UK (now Reverse Rett)