Use this directory to find patient support organisation including condition and diagnosis-specific formal and informal groups and Disabled Persons and Family Organisations.
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We have another page if you are looking for mental health and wellbeing related supports, such as counselling, support for decision making or peer support.
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. There was so little information about this disorder at the time that even the medical team who gave the diagnosis had not heard of it. Getting a diagnosis was a struggle. From that point Collene and Phil vowed to raise awareness of MECP2 duplication syndrome and fund research so that a cure may be found.
Our focus is to raise funds for research into a cure, drive activities that will increase awareness, bring newly diagnosed families together and be involved in the establishment of a register of cases of MECP2 duplication syndrome.
We have connected with the medical community in Australia to ask for their assistance in raising awareness; Dr Carolyn Ellaway, Prof John Christodoulou, Dr Helen Leonard and Dr David Amor. Further afield in the USA, we have reached out to Dr Melissa Ramocki and Dr Huda Zoghbi.
We have established a relationship with Monica Coenraads, Executive Director of Rett Syndrome Research Trust in the USA http://www.rsrt.org, who is the primary beneficiary for our fundraising efforts. MECP2 duplication syndrome families the world over are fortunate to have the resource that is RSRT.