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Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

Barth syndrome foundation, a multiple success story

Five years before the founding of Barth Syndrome foundation (BSF), I met Mrs. Shelley Bowen at the university children’s hospital in Amsterdam with her son, who was affected by Barth syndrome. Following the examination which confirmed the diagnosis we came to discuss the need of enhancing awareness of Barth syndrome by reaching out to affected families and their specialists. Upon coming home Mrs Bowen energetically started a network, ultimately spanning the U.S.A. and many countries, reaching out to affected families. But also, together with a small group of parents, she started to garner interest among specialists from various disciplines, as well as scientists. In the course of time this initiative grew to become one of the most successful endeavours in supporting patients and their families with a rare inherited disease. A website, acting as an international forum for parents and patients has become hugely popular, helping with information, support and advice. Simultaneously, efforts were made to promote clinical and basic research on Barth syndrome. The biannual meetings of which I was privileged to attend the first three have become very popular, attracting many affected families, medical specialists and scientists, all interested in Barth syndrome. All these activities have resulted in the creation of a unique community which encompasses patients and their families, clinical specialists, basic scientists, and organizational experts all dedicated to Barth syndrome, and communicating on one level without barriers. As a collateral result of this success funds could be attracted which enabled the scientific board of BSF to distribute annual grants supporting Barth syndrome related studies. Applications are screened by the members of the scientific board, and selected for funding by independent expert review and advice. As a direct effect of these activities Barth syndrome has become a regular feature in scientific journals. Also in the last years the focus of this research is now slowly moving from observational to therapeutic. Inspired by the success of BSF in the USA, similar societies focusing on Barth syndrome have now arisen in Canada, the U.K., France and Italy.

Peter G. Barth, Emeritus professor of congenital diseases of the nervous system, Emma Children’s Hospital, University of Amsterdam, the Netherlands.

the attached photo shows boys with Barth syndrome whom I was privileged to meet, during the first BSF meeting in Baltimore

Role:  Board Member