“Never doubt that a small group of thoughtful, committed
citizens can change the world. Indeed,
it is the only thing that ever has.”
--Margaret Mead
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.
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