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.

Running for Those Who Can't

Webster's dictionary says to run is move with your legs at a speed that is faster than walking. The DMRF says to run is to dedicate yourself to doing something that so many cannot because of their dystonia: “Running for those who can’t.” This past weekend runners from the east coast to the west coast took to the streets to run marathons and half marathons because they were motivated to do so for the many who have generalized dystonia, cervical dystonia, or blepharospasm and who can’t run. They trained for months to prepare for their events. They sacrificed family time, personal time, because they wanted to be a part of the DMRF’s efforts to find a cure for dystonia.

On the West coast:  Carrie Siu Butt ran because she finally can run.  Carrie has dystonia and she has been running and challenging her body in many ways since her deep brain stimulation (DBS).  This was her last half marathon and she made it look easy--but we know it wasn’t. She continues to inspire us and we are so happy for her and so proud of her accomplishment.

On the East coast: The DMRF team of 10 set out to battle the winds, the bridges and the thousands of other runners in the New York Marathon. They ran to honor a loved one living with dystonia or because, after learning about dystonia, they wanted to be the legs for the people who are not able to run.  They worked so hard to prepare for Sunday and all finished strong.  We’re thankful to all our runners: Megan Crofton, Jennifer DeVore, Basil Fedorchenko, Marnie Kudon, Ricky McAndress, Matty Merill, Tatyana Sharoubim, Danielle Wanglien, Jessica Wetters, and Laura Willis

Congratulations to all! We are humbled by your commitment and your actions. Thank you for your sweat, blisters and tears. The funds you raised will be put to good use with our research program.  Thank you!

The Power of Volunteers

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” 

--Margaret Mead

This quote has always resonated with me because it reflects the very nature of patient advocacy groups such as DMRF.  I was personally reminded of the power of committed citizens over the weekend as the DMRF Board of Directors held its mid-year meeting, which was followed by the DMRF Leadership Conference.

These meetings of world-changers were energizing, invigorating and inspiring! As an organization we are so fortunate to have the benefit of such dedicated, creative, and selfless people who are all absolutely committed to achieving the Foundation’s mission.

The DMRF Board of Directors met to review programs and progress for the year and to prepare for our very aggressive plans for 2014. The Board is comprised of thoughtful, smart people who are all affected by dystonia and support the DMRF’s efforts to fund research that will yield the most promising treatments for all forms of dystonia and, ultimately, a cure. Board members also provide keen insights into the DMRF’s awareness, advocacy, and support programs because they know personally the importance of these programs to people affected by dystonia and their families. The DMRF feels deeply its responsibility to those seeking help while waiting for scientific breakthroughs; our Board’s dedicated work reflects that every day.

The DMRF Leadership Conference was a time for learning, sharing, and re-fueling. Local leaders and online moderators from across the country came together to hear about DMRF programs and to provide input into the development of new activities that can fill the gaps in our education, awareness, and support efforts. Our leaders are selfless, clever, dedicated individuals who battle their own dystonia or stand by in frustration while a loved one struggles to meet the challenges of a day with dystonia. All the participants were extraordinarily generous in sharing their time and experiences. As a result, the support network will be stronger and more responsive to those who need to know they are not alone.

These thoughtful, committed citizens of the dystonia community are changing the world. There are no words to express the depth of our gratitude for all they do.

Fighing for a New Independence

The 4th of July is our national holiday that commemorates our independence, giving generations that followed all the freedoms afforded us through this democracy.  As we plan for the holiday, it is so important to remember that those who are affected by dystonia do not have all freedoms others enjoy – they have been robbed of the basic freedom to move, to control their bodies.  Like the signers of the Declaration of Independence, we too are fighting for a revolution: battling this disorder in order to restore the freedom to move.  We will not stop until we can claim victory!  Many are engaged in this battle.  Those who live every day with the pain and limitations dystonia brings are joined by many allies: researchers across the globe who are working every day to better understand the mechanism of dystonia so we can stop it at its origins and to find treatments, families who are working so hard to make life better for their loved ones, and friends who would do anything to advance our cause.  On this 4th of July, we salute you all for sharing your stories to raise awareness of dystonia, to everyone who is a source of comfort and support for persons living with dystonia, and finally to the researchers who are getting us closer to a new independence.  Enjoy your holiday and never forget – our work continues.

 

Jan Teller is DIA Paitient Advocate Fellow

Congratulations to Jan Teller, DMRF’s Chief Scientific Officer on his recognition from the Drug Information Association (DIA) as a Patient Advocate Fellow.  Dr. Teller will represent the DMRF at the upcoming DIA annual meeting in Boston, MA.  He is one of 19 representatives selected from patient organizations working on rare or underrepresented diseases.

While at this national meeting, Dr. Teller will meet on drug discovery, management of pharmaceuticals, biotech, medical devices and other clinical applications. Fellows will also be given a unique opportunity to meet with policymakers, industry representatives, and research institutions.  It is good to know dystonia will be represented so well at this important meeting.  Many thanks to Dr. Teller for his efforts here and with all he does for the dystonia community. Way to go!!

Dr. Teller (left) works closely with DMRF Scientific Director Mahlon R. DeLong, MD, Professor of Neurology, The Emory Clinic, on all aspects of the DMRF Science Program.