Friday, April 11, 2014

Making a Difference: Dystonia Advocacy Day

Kimberly Kuman, Executive Director of the NSDA, Diane Zaia, Stephanie Zaia, and Janet Hieshetter with Senator Durbin in his office in the Capitol. 

DMRF volunteers joined with the Dystonia Advocacy Network (DAN)* on April 8 and 9 in Washington, DC to advocate for increased support for the National Institutes of Health, inclusion of dystonia in the Department of Defense Peer Review Medical Research Program, and access to care for those seeking treatment for dystonia.  Dystonia advocates participated in 150 meetings with Members of Congress and their staff to discuss the needs and concerns of the dystonia community. 

First-time advocate Rebecca Sharp said, "Taking part in something as impactful as Advocacy Day goes beyond any fundraising and awareness activities I have ever done. It is in a category all on its own of 'Making a Difference' that connects you with not just people who have dystonia or have experienced Dystonia but also with those with the authority to make decisions and implement change that affects the entire dystonia community nationwide. I was able to experience this with my husband and son, and together we know we made a difference. We will make this a family event every year."

Stefanie Zaia, a senior at the University of Illinois, presented Senator Richard Durbin with the 2014 Dystonia Advocacy Network Distinguished Public Service Award.  Kimberly Kuman, Executive Director of the NSDA, Diane Zaia, Stephanie Zaia, Janet Hieshetter are pictured here with Senator Durbin in his office in the Capitol.  Senator Durbin was instrumental in increasing the amount of funding available for research through the Department of Defense Peer Review Medical Research Program.  $200 million will be available in the coming year to support the research projects selected by the review committees.

Dystonia advocacy is not just one day in Washington, DC. The DMRF and the other DAN member organizations work hard throughout the year.  These ongoing efforts make a difference.  For example, as announced in late March, dystonia investigators Drs. Pedro Gonzalez-Alegre and Charles Harata were funded through the Department of Defense Peer Review Medical Research Program.  Dystonia was included on the list because of the hard work of the DAN and the many advocates who have worked collaboratively in this program to educate legislators.  They have been responsive to Action Alerts and been generous in sharing their personal stories to make others aware of how dystonia changes lives.  If you are interested in joining with others to make a difference, please let us know.

*The members of the Dystonia Action Network are Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the Dystonia Medical Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association.


  1. Hi ,

    To those who suffer with dystonia or know someone who does, please read the message below.

    I am a former sufferer of dystonia and want to offer you my support if you are still struggling with this awful disorder or another movement type of neurological disorder.

    I have put many years of my life into helping dystonia sufferers find relief, and through my efforts was able to get a medical study done at Johns Hopkins Medical Center with the program that helped me.

    It is my pleasure and privilege to work full time in helping dystonia sufferers find relief and get educated
    on the health fundamentals that I have discovered that can make a huge difference on improving one's health.

    I have been effective in helping dozens of dystonia sufferers find relief and have worked with those in
    28 countries and 48 states. Please feel free to call me if you would like to learn more about my work
    and how I have been helping others.

    There is nothing more enjoyable than seeing those I work with find the relief and hope as I received many years ago.
    For more information, please visit my website at
    Thank you.
    Steve Zarren

  2. not to worrry We are all in this together! if my dystonia wants to challenge me I will challenge it right back! Think Positive and save your energy for the fun things you like to do!