First International HSSA Family Conference
 Bethesda, Maryland  ~  May 19 - 21, 2000
 

Conference participants representing 4 countries gather for a group photo

by Patricia Wood

We had speakers, receptions and opportunities to question the experts. But, most importantly, the First International HSSA Family Conference May 19 - 21 gave many families a chance to meet and share information for the first time.

Twenty-three families from four countries took part in the conference at the Bethesda Marriott. Families said it was wonderful to meet in person and share their experiences, knowledge and hope. We agreed another conference is a must, probably in two years. Suggested topics include help with the legal system, health insurance concerns, day-to-day care of HSS individuals, estate planning, and of course, research progress.

An opening reception was held May 19 so families could get acquainted in an informal atmosphere. All day meetings Saturday and Sunday with another reception Saturday night made for a very busy weekend. Even so, some families still managed to squeeze in a little sightseeing of the many famous landmarks in Washington, D.C.

Dr. Susan Hayflick, who has helped HSSA every inch of the way, was honored Saturday night with a plaque from the organization acknowledging her encouragement and support. She was also awarded a certificate of recognition from the state of California, signed by Sen. Cathie Wright, for her work with Hallervorden-Spatz Syndrome. I was also surprised with a certificate of recognition from the state of California, presented by secretary Debbie Forstall, for my work in founding HSSA.

While the families met, doctors, researchers and others attended the First Scientific Workshop on HSS at the National Institutes of Health, also in Bethesda, Md. Much important information was shared and exciting groundwork was layed for future research. The scientific workshop participants were eager to meet and exchange information with HSSA families and affected individuals. They got their wish that Saturday afternoon and evening.

Our international conference participants added much to our gathering. Roger Cooper from Scotland kept us laughing with his wonderful sense of humor and upbeat outlook on life as a 51-year-old with HSS. Edson Saubo, a parent from Brazil, found comfort in having translators there to help him. At one point he had three different translators on hand to help! We had to laugh at his initial worry that he wouldn’t be able to communicate with others. And our family from Poland, the Draheims, reminded us what lengths families will take to help loved ones with the disease. They traveled a long way with Szymon, who required constant attention and suctioning to keep him from becoming too physically distressed. They were in search of answers and wanted to be with others who understood their plight, as the other families all did.

The conference was a huge step forward for HSSA and our focus for the future is to continue to involve as many families as possible, to encourage families to raise more awareness of HSS in their individual communities through media contacts, and to increase participation in HSSA activities such as fundraising and volunteering to help sustain the organization’s growth.

Our workshop sessions covered a variety of topics that are listed below so that you can link to those of interest to you.