Serving our NSDA community through expanded outreach

Founded in 1989, the National Spasmodic Dysphonia Association (NSDA) is a not-for profit 501(c)3 organization dedicated to improving the lives of people affected by spasmodic dysphonia and related voice conditions through research, education, awareness and support.

A Message from Our President, Charlie Reavis

Charles Reavis, NSDA President

The NSDA was established in 1989 based on the desire and commitment to help people cope with the debilitating voice condition, spasmodic dysphonia (SD). The organization was brought to reality by the vision, determination and dedication of Daniel Truong, MD and founding President Larry Kolasa. From humble beginnings, the foresight, patience and can-do attitude of a small group of volunteers has grown into a strong organization that provides a loud and clear voice for those living with spasmodic dysphonia and related voice conditions.

We have a dedicated and expansive Support Network that started with six local groups in 1989 and has grown to over 55 local groups across the US and more than 240 Area Contact People (ACP’s) in the US and other countries.

Our Research Program has grown over the years to focus on basic research projects to gain more understanding about the etiology or cause of spasmodic dysphonia and related voice conditions. A few years ago, we re-structured our research efforts to provide ‘seed’ funding for projects to develop data and information to be used as a basis for applying to NIH for large grants. This approach is paying dividends in gaining more understanding about our voice conditions and allowing us to use our financial resources in a more effective and efficient way.

As we celebrate our 30th anniversary in 2019, it is appropriate to review our history, evaluate our strengths and weaknesses and chart our course for the future. One way to do that is recognize the fact that many people in our community have other voice conditions in addition to SD or other than SD. During the NSDA Board meeting in 2018. we decided to expand our Mission and Vision to include ‘related voice conditions’ in addition to SD. I stated during our Board discussions that we are lucky to be part of an organization that understands how to live and cope with a voice condition and we should expand our reach to help others who are trying to cope with related voice conditions. I believe we have the tools and capacity to serve a larger community through expanded outreach.

The NSDA Mission and Vision have been very targeted but our actions and behaviors have been anything but. We care regularly for those with other voice conditions, especially in our local support groups. Our local leaders reference many cases of those living with other voice conditions coming to a meeting and asking whether they can participate even if they don’t have SD. Anyone who comes to a local support meeting is included, regardless of condition, and by officially expanding our Mission and Vision, we make it clear that all are welcome.

The NSDA has demonstrated 30 years of dedication and caring and our Mission and Vision now extends to people living with related voice conditions, their family members and friends.

Mission: The NSDA is dedicated to improving lives of people affected by spasmodic dysphonia and related voice conditions through research, education, awareness and support.

Vision: The Vision of the NSDA is to ensure the ongoing viability of the organization that will continue to lead the effort to eradicate spasmodic dysphonia and related voice conditions.

The NSDA will never move away from its core focus to eradicate spasmodic dysphonia but we are expanding our research, materials and information to include related voice conditions as indicated in other sections of this website. The NSDA welcomes people with SD and related voice conditions to our unique family!

Our Impact

NSDA is comprised of people with spasmodic dysphonia and related voice conditions, healthcare professionals, volunteers, friends, and families.Together, we continue to grow through awareness, advocacy, and outreach; help to improve the lives of people dealing with voice disorders; and work to support research in order to bring understanding to these disorders.