Tuesday, May 21, 2013

Thanks and Congrats to Ali London for NY Times Op Ed

Thanks and congratulations to Allison London for her excellent Op Ed in the May 19 New York Times entitled “Disease and the Public Eye” where she discusses her experience with dystonia and thoughts on disease awareness. We join with others in expressing our gratitude to Ali for sharing her story so that others might learn more about dystonia and how it changes the lives of those affected. It takes courage and commitment to open yourself up like this. Thank you to Ali and everyone who has shared their dystonia stories. You are our "celebrities" and we thank you!

In the photo: Allison London is one of three recipients of the DMRF’s Douglas Kramer Young Advocate Award announced earlier this year. Pictured left to right: Melissa Phelps, Nicole Dean, Allison London.

Thursday, May 2, 2013

Gratitude for Our Dystonia Advocates

Many thanks to the nearly 100 advocates who traveled to Washington, DC this week to make sure dystonia remains a priority to our legislators. Words cannot express the gratitude we have for all of you – for sharing your stories, navigating the maze-like halls of the Congressional office buildings, and making sure key Congressional staff persons know about dystonia and how they can help. The DMRF is proud to be a part of the Dystonia Advocacy Network, joining with the Benign Essential Blepharospasm Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association, and ST/Dystonia in hosting this event, but just as importantly, working throughout the year to keep dystonia on the minds of our Congressional leaders.

Congratulations to our Douglas Kramer Advocacy Award recipients, pictured below. From left to right, we applaud Melissa Phelps, Nicole Dean, and Allison London.. We look forward to working with these dedicated, young advocates in continuing to push the dystonia legislative agenda forward.

A special thank you to all of our advocates for your work these past few days. Great job, everyone!