Huntington's Disease Society of America

HDSA logo

Huntington's Disease Society of America (HDSA) is a nonprofit organization dedicated to improving the lives of everyone affected by Huntington's disease (HD). Through its efforts in education, advocacy, research funding, and support services, HDSA aims to promote understanding of HD, support those facing the disease, and ultimately contribute to the discovery of a cure. Huntington's disease is a hereditary, progressively degenerative brain disorder that leads to severe physical and cognitive decline, ultimately resulting in death.

History

The Huntington's Disease Society of America was founded in 1967 by Marjorie Guthrie, the widow of American folk musician Woody Guthrie, who died from complications of Huntington's disease. Since its inception, HDSA has grown into the largest nonprofit organization in the U.S. dedicated to supporting individuals and families affected by Huntington's disease. Its establishment marked a significant step forward in the fight against HD, providing a platform for advocacy, research, and support that had not previously existed on a national scale.

Mission and Activities

The mission of the HDSA is to improve the lives of everyone affected by Huntington's disease and their families. The organization pursues this mission through a variety of activities:

• Education: HDSA provides comprehensive resources for patients, families, healthcare professionals, and the general public to increase understanding of Huntington's disease. This includes educational materials, workshops, and seminars.

• Support Services: The organization offers support to those affected by HD through counseling services, support groups, and social events. These services aim to provide a community for individuals and families, reducing the isolation that can accompany the disease.

• Research Funding: HDSA invests in scientific research aimed at finding effective treatments and ultimately a cure for Huntington's disease. This includes funding for basic science, clinical trials, and the HD Human Biology Project, which encourages scientists to study HD within the context of the human body.

• Advocacy: The society advocates for policies and legislation that benefit the HD community. This includes efforts to increase federal funding for HD research, improve access to care and support services, and raise awareness about the disease among policymakers and the public.

Centers of Excellence

HDSA supports a network of Centers of Excellence across the United States. These centers provide comprehensive multidisciplinary care and services to HD patients and their families. The care teams at these centers include neurologists, psychiatrists, physical therapists, social workers, and other professionals skilled in addressing the complex needs of HD patients.

Events and Fundraising

HDSA organizes numerous events throughout the year to raise awareness and funds for HD. These include the HDSA Annual Convention, Team Hope Walks, and the HD Therapeutics Conference. These events provide opportunities for the HD community to come together, share experiences, and support the organization's mission.

Conclusion

The Huntington's Disease Society of America plays a crucial role in the fight against Huntington's disease. Through its comprehensive approach to education, support, research, and advocacy, HDSA continues to make a significant impact on the lives of those affected by HD. As research progresses, the organization remains a beacon of hope for finding a cure and improving the quality of life for individuals with Huntington's disease and their families.