Monday, May 4, 2009

Personal Testimonies

Pictured above is Dale Dirks, President, Health & Medicine Counsel of Washington – briefing dystonia advocates

Recently we put a call out for people to share their stories with us and we are thrilled with the response. Thank you to all of you who have written and to all of you who have shared your stories with others so that people can better understand what dystonia is and how it changes the lives of those affected.

Tomorrow the DMRF will join with representatives from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to prepare for our Wednesday visits with Members of Congress – to help them learn about dystonia and how they can help us in our mutual goals of wiping-out dystonia. This is an important and exciting annual activity and these five organizations have been working together for the past several years as the Dystonia Advocacy Coalition to make the dystonia messages to our legislative leaders louder and stronger. We will meet to talk about the need for increases in NIH funding, concerns about patient access to treatments/reimbursement for medications, and concerns the dystonia community has regarding proposed follow – on biologics legislation but it is the personal stories the Members of Congress and their staff persons will remember. We are educating these legislators – one shared story at a time and it is making a difference.

We look forward to sharing with you stories from Advocacy Day but in the meanwhile – keep your stories coming.

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