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 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