Founded in 1989, the National Spasmodic Dysphonia Association (NSDA) is a not-for profit 501(c)3 organization dedicated to advancing medical research into the causes of and treatments for SD, promoting physician and public awareness of the disorder, and providing support to those affected by SD through symposiums, support groups, and on-line resources.
NSDA is comprised of people with SD, healthcare professionals, volunteers, friends, and families. It is the only organization dedicated solely to the SD community.Together, we continue to grow through awareness, advocacy, and outreach; help to improve the lives of people dealing with SD; and work to support research in order to bring understanding to this disorder.
The NSDA is strongly committed to understanding the science of SD and supporting research. Better treatment and ultimately a cure has always been a primary goal of the organization. Now, with a roadmap for research initiatives, there is a growing number of medical professionals interested in pursuing SD research. What we do:
- Provide small seed grants to new or established investigators for up to $20,000 per year. These can be for startup grants enabling successful applicants to subsequently seek funding from the National Institutes of Health or may provide partial support for post doctoral research training relating to SD.
- Work with and support the Dystonia Coalition, a collaboration of medical researcher, scientists, institutions, patient advocacy organizations, that is funded by the Office of Rare Diseases and National Institute of Neurological Disorders and Stroke.
- Consult with our Scientific Advisory Board composed of pre-eminent leaders in SD research along with a Medical Advisory Board that is comprised of leading clinicians in the fields of otolaryngology, speech pathology, and neurology. Collaborate with the National Institutes of Health (NIH) and other related organizations on innovative projects to better aid the SD community including co-sponsorship of research workshops.
- Support a brain donation program to accelerate understanding of the neurological origin of SD. Published results from this research has shown changes in the white matter of the brain of people with SD, but we need more brain donors to help continue this research.
Through outreach, education, and advocacy, we raise the profile of SD in the community, allowing for quicker diagnosis, better understanding, and more acceptance of this mysterious disorder. What we do:
- Maintain a healthcare referral directory of healthcare professionals that specialize in SD.
- Reach out to media to shed light on the impact SD has on the lives of those affected by it.
- Work cooperatively with the Dystonia Advocacy Network (DAN) to educate legislators about SD, increase the funding for research at the National Institutes of Health (NIH), and participate in an annual Advocacy Day on Capitol Hill.
- Exhibit annually at professional medical educational conferences to reach out to healthcare professionals treating SD.
- Collaborate with the American Academy of Otolaryngology and the American Speech-Hearing-Language Association to promote awareness events such as World Voice Day (April 16) in addition to Dystonia Awareness Week (June).
- Host an annual symposium and regional symposiums to provide a learning environment in which people with SD may enhance their understanding of the disorder, learn about the latest information on research and treatments, and network with others with SD.
- Publish the an acclaimed newsletter, Our Voice, twice a year that contains updates on research, awareness, and support.
- Provide an educational and informative website (www.dysphonia.org) that includes voice samples, video clips, and information on treatment, support, events, and the latest news.
The NSDA offers a range of support options to fit the needs of affected individuals and their families. It can provide companionship, offer valuable coping strategies, and lessen the loneliness and isolation that may play a role in chronic disorders. What we do:
- Establish and maintain support groups, so that people help others and themselves. NSDA sponsors an international network of support groups and area contact persons across the United States and several other countries.
- Publish and produce books, brochures, DVDs, and other resources to help better understand what SD is, and assist in educating family, friends, and others.
- Create special tools aimed at specific issues within the SD community such as employment,disability and insurance.
- Develop a network for younger people living with the disorder.
- Sponsor on-line initiatives including an internet bulletin board http://www.dysphonia-bb.org/forums/sd/ that provides an open forum for people with SD to exchange ideas, discuss personal experiences, and to connect with others.
- Publish a quarterly on-line newsletter called Voices of Support which recognizes the support activities of the organization.
- Cultivate volunteer leadership through an annual Leadership Day in conjunction with the annual patient Symposium. Key leaders in the organization are invited to learn from, listen to, and encourage one another. In addition, these events allow the NSDA to recognize and thank its leaders who are the "front lines" of representation.
Join us and "speak out for spasmodic dysphonia!"