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The Florida Chapter was established in 1992 by Susan Klee and Karen Upchurch to assist families in Florida with the many difficulties that one deals with when there is a rare disease affecting their family. We try to assist families with the purchase of equipment and medical needs that insurance companies, etc. will not buy, respite care, stipends for families to attend annual conferences, and chapter meetings, money for SIBS to participate in activities that they normally don't get to, and money for research or to assist with Our national organization with operations.
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THe Florida Chapter raises money by doing garage sales, cake sales, candy sales, raffles, brunches and walk a thons. Some of our funds are donations from corporations and bereavement donations. In 2000 we add families in the south Georgia area. We also started a program to assist families within our coverd area with funds during emergency situations ( a child being hospitalized, parent illness, etc.).
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