Reflections from the John H. Menkes Children & Family Symposium

He woke up extra early this morning and said, “Today is the day I finally meet someone else with dystonia!” - comments from the mother of a child attending the symposium


This past weekend the Foundation held its John H. Menkes Children & Family Symposium. Our time together was full of learning, laughing and connecting with one another. We were pleased to have Drs. Michele Tagliati, Jennifer Friedman, Cindy Zadikoff and Vicki Shanker present on the latest dystonia medical information. Guitarist and DMRF Ambassador, Billy McLaughlin treated everyone to a private concert Friday evening and then worked with the younger children Saturday morning in writing a song about living with dystonia. The kids were fabulous. They participated fully in the educational sessions and then fought the Chicago Air & Water Show crowds at the Shedd Aquarium to enjoy an afternoon off-site. Some former “kids” shared tips for how to make the transition to college and living independently with our teens and the parents attending while the siblings of kids affected by dystonia shared their insights on how dystonia has affected their families. When asked what they were most proud of in their family, one tearfully mother replied that she was proud of the courage her daughter demonstrates every day in dealing with dystonia. I would say that everyone who shared in this special weekend left inspired by the courage they see those affected by dystonia, children and adults, show every day.

Dystonia Insurance Survey

Dystonia Insurance Survey

The DMRF is joining with the other dystonia patient organizations to survey the community on their experience with insurance coverage for dystonia. It is our collective hope that we will be able to identify the gaps and as a community – work toward addressing these so that people will not have to be denied treatment – whether DBS, neurotoxin injections or whatever it is that helps those affected by dystonia to live life to its fullest. We hope you will participate and help to promote participation in the survey. If you do – you will be helping all of us to help so many others.

Below is a link to our online survey.
https://www.surveymonkey.com/s.aspx?sm=CCbhC3M2MF5J3RlSsKKQvg_3d_3d

Thank you!

Dystonia Twitter Awareness Day

Dystonia Twitter Awareness Day

Calling all Twitter users to come out
and tweet about #dystonia today, July 22, 2009.

http://twitter.com


We are trying to create a #dystonia Twitter Trend
to raise awareness and we need at least 1,000 tweets about #dystonia.

Why the # before the word dystonia?
It makes it easier to search for posts about dystonia.

Join us today and tweet about #dystonia.


Dystonia Twitter Awareness Day

John H. Menkes Children and Family Symposium

Everyone experiences moments in their lives that they will never forget, people that they will never forget. We carry these moments and people with us, learning what it means to become part of something bigger. For many in the dystonia community the John H. Menkes Children & Family Symposium represents just that – the chance to become a more integral part of the DMRF family.


We invite you to come out and take part in this year’s Symposium, which is scheduled for Friday, August 14th through August 16th in Chicago. Visit http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php for more information and to register.

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.

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: ozabelina@dystonia-foundation.org

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.