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Board Meeting (continued from page 1)
be held in NH again, hopes to raise at least $15,000. Joan Campione, PRISMS fundraising chairperson, has many great ideas, including a grant-writing mission. We will also begin asking PRISMS' families for an annual membership contribution ($25).
Discussion has begun for the next SMS international gathering. The focus will be on families have lots of time to network with each other at a sight where there will be opportunities for various activities and relaxation. More to come on this later.
Our long-term goals will emphasize the importance of raising awareness so that individuals are diagnosed and receive services earlier. Objectives include increased Internet use, media involvement, and networking.
There was also a great deal of discussion about research, and the need for PRISMS to work closely with our research teams and support their valuable work. With the recent breakthroughs in the Human Genome Project, board members could hardly contain their excitement over the implications for Smith Magenis syndrome. There was focused discussion on the three major SMS research project cites: Ann Smith M.A. D.Sc. (hon.) at the National Institute of Health, James Lupski, M.D. Ph.D. and Lorraine Potocki M.D. at Baylor College of Medicine/Texas Children's Hospital and Sarah Elsea,Ph.D. at Michigan State University. Board members were treated to a tour of the Research Center at Texas Children's Hospital; the highlight of the tour was a visit with two SMS mice -- more on this in the next issue of
Spectrum.
It was a productive board meeting! Look for the fruits of our labor on our website and in future issues of Spectrum. And, for anyone interested, we always need volunteers!!
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