Saturday June 9, 2001 the International Society for Mannosidosis & Related Diseases participated in a landmark public awareness event for genetic diseases. The day’s activities were co-sponsored by the Genetic Alliance, NIH and a consortium of lay advocacy groups, professional organizations and corporations. The entire event took place in the Smithsonian Institution’s Museum of Natural History in Washington, D.C.
Day-long highlights included a town-hall meeting, workshops, seminars, speakers, activities for kids and, in the evening program, the debut of Rick Guidotti’s photo tribute to individuals with genetic diseases. ISMRD was one of 14 American nonprofit organizations participating through photographs Rick Guidotti took of four teenagers with Alpha Mannosidosis. Two of these children, David Pierce and Taryn Murphy, were featured in the exhibit which sought to counter common perceptions of beauty. David’s sisters, Erin and Lauren, had their photos displayed in a special slideshow during the event. The entire day-long event was free and open to the public.
ISMRD had additional cause for pride in the recognition of John Forman, a Board member, parent and activist, by the Genetic Alliance. John shared the new “Art of Advocacy” award, presented by the Alliance, with Augusto Odone, founder of The Myelin Project and father of the child portrayed in the film “Lorenzo’s Oil