2009 Year End Message from the Founder, Noel Valero

The American Dystonia Society (ADS) was founded in November 2009 as an answer to many Dystonians' desire to have a transparent, efficient foundation that would deliver most of their donations to research. After extensive discussion and brainstorming with other Dystonians, I recognized that such an organization would be possible using a 21st Century Business Model. Upon further investigation, I was able to identify several fellow Dystonians- Michele Weber, Rosemary Flynn, and Rebekah Willis - to help lead this effort. It is only with their volunteer support, commitment, and leadership that I am confident we can make an impact.

In a short amount of time, we have formed a strong team with a passionate group of directors as well as a distinguished, forward thinking and creative science advisory board. Our first-rate team was formed quickly enough to allow us to be accepted as a member of the Dystonia Coalition (DC). The DC is a consortia of university-based Project and Clinical Centers for Dystonia and non-profit Patient Advisory Groups, the latter including ADS. The DC's primary funding is a $6.2M National Institute of Health (NIH) grant (over 5 years) to research Focal Dystonias, a focus that will hopefully provide insight into the Generalized and Multifocal types of Dystonia as well . Membership in the DC will allow ADS to make a direct, immediate impact. Specifically, it will means that our donations will go to projects already identified as a priority by the DC and supplement promising lines of investigation initiated under the NIH grant.

Our call for volunteers has had tremendous response. When we get into full swing by Spring 2010, we will be a major presence in the Dystonia research and advocacy world. Our philosophy is both innovative and compassionate. We will vest our volunteers with the autonomy to work with minimal direction from the ADS as long as they follow our mission statement. Our intent is not to solicit donations from fellow Dystonians, although voluntary unsolicited donations will be accepted. Rather, we ask our fellow Dystonians to share their passion and compassion by volunteering their time and energy to help others. Furthermore, our pledge is that at least 80 cents of every dollar collected will go toward research. As much as possible, we will minimize overhead to deliver as much of the remaining 20 cents to advocacy and patient support. We will not waver in that promise.

As part of out effort to minimize overhead, we have teamed with WEGO Health and Care4Dystonia to form a synergistic partnership. WEGO Health and Care4Dystonia provide excellent on-line patient advocacy, education, and support forums. By continuing in that role in association with ADS, WEGO Health and Care4Dystonia will do what they do best and allow ADS to avoid any unnecessary duplication of efforts without diluting the voices of all 3 organizations.

On behalf of the American Dystonia Society family, we wish you all a Happy New Year and a 2010 full of hope, compassion, and caring for one another.

Noel Valero
Founder and co-President
American Dystonia Society, Inc