Wednesday, August 19, 2009

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.

Monday, August 10, 2009

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.

Thank you!