Battling Dystonia through Advocacy

An election year, with all the mud-slinging ads, has the potential to make us all a bit cynical about the democratic process.  However, the experience of dystonia advocates should make believers out of us.  The power of advocacy is clearly demonstrated through the work of the Dystonia Advocacy Network (DAN) organizations. This year alone the DAN has worked with other disease organizations on the important issue of changing the regulations allowing device companies with Humanitarian Device Exemptions (such as the company responsible for the hardware used in deep brain stimulation for dystonia)  to make a profit – critical to our attracting new companies to rare diseases. And this legislation has passed!  Our efforts to have dystonia included on this list of conditions eligible for application for federal funding of research continue, and this year dystonia has been included on the list emerging from the Senate!  This is now in a holding pattern because of the Federal budget situation and the Continuing Resolution – but this demonstrates the importance of dystonia advocacy.

We are now looking to have FDA be better informed about dystonia, and the DAN is inviting those affected by dystonia to share your story with the FDA through the patient-focused drug development initiative and help the FDA understand what our community wants relative to treatment. If you are interested, please go to http://dystonia-advocacy.org/actionalerts/ before November 1, 2012.

Advocacy is so important and it is a way to fight dystonia while our scientists battle it in the laboratories.  Please consider joining us for Advocacy Day next year scheduled for April 30 – May 1, 2013 in Washington, DC.  To learn more, please contact me at jhieshetter@dystonia-foundation.org

We have a great deal of work yet to do and we hope you will consider joining us next year.

Millie Munoz Inspired Everyone She Met

Dystonia robs a person of many things – the ability to control their own body, have a voice, control their day. As it has done with so many others, dystonia took many things from Millie Munoz.  But it never did take Millie’s zest for life, or her strong desire to help and inspire others. 

Sadly, Millie passed away on Monday, and while those of us who knew and cared deeply for her try to cope with this huge loss, we are in awe of Millie and all she did with her life. Millie was a dystonia advocate, working tirelessly to make sure that the dystonia community had what it needed.  She went to Washington, DC and met with members of Congress to educate them about dystonia.  She utilized the media to share her story so that others might better understand what dystonia is, and she worked with young people affected by dystonia to help them develop strong support networks and be educated about every aspect of dystonia. Millie was a frequent speaker at DMRF educational forums, often at her own personal health risk – pushing herself to travel so that she could participate. Millie touched everyone she met. 

You could not help but be swept up in her enthusiasm and optimism.  As another dystonia advocate said today upon learning of her sudden death, “I can’t imagine the world without Millie.”  Nor can any of us who worked so closely with her and who were honored to call her a friend. 

Our sympathies go out to her family and all who knew her. The sun shines less brightly because she is gone, but the world is a better place for her having been here, even for a short period of time.

Dystonia Advocacy Day - 2010

Pictured above are just some of the many dystonia advocates who came out to Washington in support of Dystonia Advocacy Day 2010.

Many thanks to the dystonia advocates, especially our many first-timers, who participated in the biggest and best Dystonia Advocacy Day to date. Congratulations everyone! You were all fabulous!

Having so many wonderful people give their time and share their personal stories about how dystonia has affected their lives made for a very successful event. We are so grateful to all of you for joining us in this important effort. We appreciate how difficult it was for many of you to travel into Washington, DC and go from office to office in very warm temperatures. Please know your efforts do make a difference.

Advocacy is so important and you were able to enlighten many key individuals about dystonia and this is so important! Collectively we had over 100 meetings on the Hill – helping Members of Congress and/or their key health staff members understand what dystonia is and how they can help our community. People left exhausted but energized by the day’s work!

The Dystonia Advocacy Network was pleased to welcome Steve Groft, PharmD, Director of the NIH Office of Rare Disease Research as our key note speaker Tuesday evening – providing an overview of the important role patient advocates have in the research process.

We were also pleased to present Florida Congressman Bill Young with the 2010 DAN Distinguished Public Service Award for his support of the dystonia community.

A special salute to Millie Munoz for her efforts to join us in Washington, DC. Congresswoman Ileana Ros-Lehtinen of Miami highlighted dystonia and Millie on the floor of the House of Representatives yesterday. Check it out on YouTube: http://www.youtube.com/user/cemiwire#p/a/f/0/rzGlJ2WB9X0