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Shelley Bowen is the Director of Family Services and Awareness for the Barth Syndrome Foundation (BSF).
BSF works to increase awareness on a global level among the medical community, academic community, the medical research community and the lay population about Barth Syndrome. There are better strategies today than ever before for living with Barth Syndrome. Nonetheless, it often shortens the lifespan of people, especially children.
Shelley speaks with Mike and Joyce about life with Barth Syndrome, and how families cope when life ends.
For more information about Barth Syndrome, see http://www.barthsyndrome.org
