The sixteenth annual convention of the Huntington's Disease Society of America officially began at 9:00AM with a welcome from Donald A. King, chairman of the Board of Trustees. Dr. King spoke about the importance of funding-raising for research. Generation 2000 has raised 2.7 million dollars in just under 18 months.

He also spoke about the importance of the Centers for Excellence in providing care for people with Huntington's Disease.

He urged the attendees to become advocates to increase funding of the NIH, to enact medical privacy legislation, and to address other issues that affect HD families.

He concluded by expressing his fervent hope that this would be the last generation of HD.

John Madden, Ph.D., who chaired the Convention Steering Committee, also spoke. Dr. Madden acknowledged the participants for coming to the convention and being committed to learn as much as we can. He said that he hoped we would return to our communities ready to lead the fight against HD and for greater education and awareness.

Convention attendees were also welcomed by W.D. 'Sandy' Sanford, President of the San Diego Chapter, and California State Senator Dede Alpert. The San Diego Chapter has had much success in fund raising n the last year.

California State Senator Dede Alpert spoke about the importance of state governments in setting a leadership agenda for natonal health issues. Two of her biggest concerns are extending health insurance to everyone and to improving long term care facilities. She hopes to get the legislature to contribute to funding for California Centers of Excellence.

HDSA Executive Director Barbara Boyle spoke on the convention's theme 'fulfilling the promise.' The promise was to make this the last generation of HD. Much progress has been made. In the last five years, HDSA's budget was increased from $1 to $10 million. In the last four, funding was research has increased 250% and contributions to Centers of Excellence have gone fron $50,000 to one million dollars.

She cited the major breakthroughs of Dr. Elena Cattaneo, Dr. Robert Friedlander, and Dr. Christopher Ross, all Coalition for the Cure grantees. At the conclusion of her talk, she received a standing ovation.

- published June 30, 2001
by Marsha Miller, Ph.D.