“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
This quote has always resonated with me because it reflects the very nature of patient advocacy groups such as DMRF. I was personally reminded of the power of committed citizens over the weekend as the DMRF Board of Directors held its mid-year meeting, which was followed by the DMRF Leadership Conference.
The DMRF Board of Directors met to review programs and progress for the year and to prepare for our very aggressive plans for 2014. The Board is comprised of thoughtful, smart people who are all affected by dystonia and support the DMRF’s efforts to fund research that will yield the most promising treatments for all forms of dystonia and, ultimately, a cure. Board members also provide keen insights into the DMRF’s awareness, advocacy, and support programs because they know personally the importance of these programs to people affected by dystonia and their families. The DMRF feels deeply its responsibility to those seeking help while waiting for scientific breakthroughs; our Board’s dedicated work reflects that every day.
The DMRF Leadership Conference was a time for learning, sharing, and re-fueling. Local leaders and online moderators from across the country came together to hear about DMRF programs and to provide input into the development of new activities that can fill the gaps in our education, awareness, and support efforts. Our leaders are selfless, clever, dedicated individuals who battle their own dystonia or stand by in frustration while a loved one struggles to meet the challenges of a day with dystonia. All the participants were extraordinarily generous in sharing their time and experiences. As a result, the support network will be stronger and more responsive to those who need to know they are not alone.
These thoughtful, committed citizens of the dystonia community are changing the world. There are no words to express the depth of our gratitude for all they do.