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.

Celebrating a Success for Research

Great news! The appropriations bill passed by Congress this week included dystonia on the list of eligible conditions for the DOD Peer Review Medical Research Program AND this program received an increase of $150 million over the FY13 level. This increase in funding will allow for more research to be funded and/or for research to be funded at higher levels

So many of you helped to make this happen. It demonstrates the power of advocacy.  Many of you have been working tirelessly to have dystonia included. THANK YOU!

We also want to recognize and express our appreciation to the late Honorable Bill Young, Congressman from Florida.  Congressman Young had been a champion of dystonia, and his support of the addition of dystonia to the PRMRP list was so important this year.

This is a wonderful example of a collaborative effort. The DMRF is proud to work with the other members of the Dystonia Advocacy Network (DAN) on important efforts such as this that identify research funding opportunities for our talented and dedicated dystonia researchers. DAN members, the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association, and the DMRF, are pleased to be working on plans for Advocacy Day this year - mark your calendars for April 8- 9 in Washington, DC.  More information on how you can register will be announced in the coming weeks.

In the meanwhile, thank you again for helping the dystonia community reach this important achievement!