Monday, June 29, 2009

DMRF Support Group Leader Appreciation Week

Support group leaders are amazing people. Despite their own challenges in living with dystonia, they work tirelessly to help others affected by dystonia. They are the backbone of the DMRF and the work they do is vital to the Foundation’s mission and our ability to really provide support to patients and their families. We are so pleased to announce that the week of June 29th will be DMRF Support Group Leader Appreciation Week!

It is fitting that this recognition be the week our nation celebrates the Independence Day holiday – as support group leaders are key to supporting those affected by dystonia to achieve independence from dystonia. Through their ongoing efforts support group leaders provide opportunities for education and learning to take place. Every day, these unsung heroes are helping people connect with other people – providing them with a precious gift – knowing that they are not alone in this battle and that the Foundation is here for them and their families. Because of these leaders, many people now know that dystonia does not define them.

Wednesday, June 17, 2009

Dystonia Insurance Initiative

It is with great pleasure that I announce the arrival of a new member of the DMRF team – Oxana Zabelina. Oxana is in Chicago working with the Foundation on the challenges of dystonia and insurance. She is currently a graduate student at the University of Massachusetts working on her Master of Public Policy and Administration. Oxana has a PhD in economics from Rostov State University, Rostov- on- Don, Russia.

In addition to her academic qualifications, Oxana completely understands dystonia from her personal experience. She was diagnosed with general dystonia as a child and lived with the twisting, tremors and pain that this disorder brings until the successful DBS treatment she underwent four years ago. Her DBS was highly successful and now she is committed to helping others living with dystonia. We are so fortunate to have the benefit of her dedication and talents as we tackle this important issue.

Oxana is working with the DMRF as an intern – allowing us to implement plans to identify the challenges and successes persons living with dystonia have experienced in getting their treatment covered by insurance. She is currently designing a survey for patients and healthcare providers. We expect to roll out the survey this summer and will announce its availability when ready. In the meanwhile, if you would like to share your insurance stories and welcome her to the DMRF, please feel free to send her an email at:

Monday, June 8, 2009

Thank you!

Thank you to all of you who created new awareness last week. Your efforts and your sharing personal stories – is helping to make a difference. Thank you all so much. We are reaching people and you just never know when you will encounter someone else who is aware or who is seeking information. Last week, while making travel arrangements for an upcoming conference, I was speaking with a toll-free operator who wanted to send the confirmation to my email address. When I gave it to her, she paused and said – “My daughter has dystonia and the DMRF website has been so helpful to our family. Thank you.” She went on to tell me the good news of how her daughter is doing (much better) and how grateful she was to have the Foundation’s site as a resource. The personal stories combined with accurate, educational information is what is helpful in creating positive awareness. National Dystonia Awareness Week is over but the need to awareness continues. Keep up the good work and please let us know if we can do anything to support your local efforts.

Tuesday, June 2, 2009

H. Con. Res 134

We are grateful to Congressman Danny Davis of IL for his efforts with H. Con. Res 134 expressing the sense of Congress regarding the need for further study of dystonia. This resolution directs the Director of the National Institutes of Health to take a leadership role to fight dystonia. Additionally, this resolution suggests increasing public awareness, biomedical research, patient access to therapies and diagnostic tests to better understand the frequency of dystonia.

Many thanks to Congressman Davis for his ongoing efforts!

Monday, June 1, 2009

National Dystonia Awareness Week

For more than 30 years, the Dystonia Medical Research Foundation has worked to wipe out dystonia. Our efforts began long before most people, including healthcare professionals, really knew or cared about dystonia. The progress of the dystonia community is directly attributable to those of you willing to share your stories and your insights. Whether it is on television or in a written publication in a large city or a small community, or perhaps as importantly by talking with someone you know or a complete stranger in the checkout line at a grocery store – you are making a difference. Awareness is a process – every piece important, every person’s story contributing to our goal of helping others understand what dystonia is and how we intend to fight it.

This is National Dystonia Awareness Week. We encourage you to continue to tell your stories and then let us know of your activities. Let’s share our awareness experiences and successes with each other. We can’t wait to hear of your activities this week. Each and every interaction is important for together we are making a difference.

Visit or email us at and share your story.

Thank you!