Monday, August 29, 2011
Like you might expect, when I was finally diagnosed with dystonia after struggling with it for a number of years I rushed home and went online to learn more. I wanted to educate myself about the disorder that had taken so much away from me. I had hopes of finding some magic bullet that might make it go away and make me a "normal" person once again. What I found after just one click of the search engine was the DMRF! It instantly became clear to me that I wasn't alone in searching for a cure and that there were decades of outstanding efforts already invested by the DMRF and the families and individuals who founded and continue to serve the organization. My dystonia was a personal struggle that had been very lonely for me up until that point. That feeling of loneliness has been transformed into a feeling of community - a community driven to support each other while pushing forward through the seemingly impossible science needed to understand the miracle of the human brain.
Never would I have thought that neurology would become as big a part of my daily consciousness as it is today. Some people know of my son and his courageous battle with epilepsy. I can't go more than a few minutes in any day without feeling an immense urgency for the advancement of neuroscience. And never would I have thought while sitting at my computer during my first visit to the DMRF website that I would one day be nominated to the board of directors. It is profoundly humbling to be surrounded by people whose dedication and hard work have put the DMRF at the forefront of the quest for a cure. I'm honored to be joining the board as the DMRF leads important initiatives that will lead to a globalization of our community and the sharing of research currently going on all across the world. Joining the DMRF board of directors inspires me to raise my own expectations for how I can contribute towards finding a cure, how I can better support the raising of awareness of dystonia worldwide and most importantly how I can be an asset to any and all individuals who struggle with the challenges dystonia poses for their own sense of wholeness and self-worth. Together we make greater progress towards our future goal - a world without dystonia.
DMRF, ex-officio board member
Wednesday, August 24, 2011
Pictured are Silas Courson and Amy Behar, participants of the 2011 DMRF John H. Menkes Children and Family Dystonia Symposium.
This past weekend 200 people traveled to Chicago to participate in the DMRF’s John H. Menkes Children & Family Symposium. Traveling when you are affected by dystonia is challenging yet these people and their families did and the result was a fabulous gathering of learning, support and wonderful memories. The program was expanded to include adults with focal dystonias – cervical dystonia; focal hand dystonia; dopa-responsive-dystonia; laryngeal dystonia or spasmodic dysphonia and then kids with generalized dystonia; DYT1 dystonia and myoclonic-dystonia. It didn’t matter what form you had – the emphasis was on meeting one another and learning that no one with dystonia needs to battle alone. We had world-class speakers providing information and many new friendships were formed. The DMRF is proud to serve this community and we are ready and willing to assist anyone who needs help – after this weekend we have new volunteers who are also willing to support those who need are facing each day with dystonia.
Thank you to all who made the effort to join us – to all of our wonderful speakers and to our fabulous volunteers. Together – there is nothing that can stop us!