Communities In Action Achieve Results

Every Spring, individuals with Dystonia from throughout this vast country lend their enthusiasm, personal struggles and impassioned advocacy to advance mission critical policies aimed at eradicating Dystonia and improving patient care. The power of advocacy is nothing more – and nothing less – than the power of people banding together in pursuit of a common cause. The collective wealth of the experiences we recount illustrates the importance of the policies we promote. Our participation reminds those inhabiting halls of power in Washington that Dystonia is on the map…to stay…until we find the means to whip this debilitating condition.

Edited 2709338_sOn the flip side, we gain tremendous gratification from the knowledge we’re actively pursuing a cure, not merely awaiting one. One of the most difficult aspects of living with chronic illness is the degree of helplessness we exercise over the villain holding our bodies hostage. Participating in research studies, raising needed funds and advocating for important policies are direct and meaningful contributions that imbue us with a sense of purpose. Remember, no one chef bakes this cake. The search for a cure is a team effort reliant upon medical and research professionals, healthcare partners, patients, fundraisers, advocates, and all who support us. The accumulation of efforts we undertake propels us forward.

Those who can’t make Advocacy Day should take heart. Flocking to DC for a day of oral combat is by no means the only way to muster our numbers. The strength of our platform is fueled by the collective resonance of our individual appeals, assembled piece by piece. We needn’t travel great distances or endure a whirlwind of meetings jam-packed with issues. Advocacy can be as simple as a call or email to your local politicians introducing your health challenges and policy agenda. Time-sensitive “action alerts” requesting specific communications offer additional opportunities for participation “from a distance.” Sweeping displays of strength are composed of thousands of “tiny” efforts. We need every available voice raising our concerns as it’s impossible to know who or how many will tip the balance.

By no means are we building castles in the air. Health activism conducts serious business.  Washington is steeped in special interests strong-arming policy and politicos jostling for position. Everyone with an interest in tangible outcomes bears responsibility for expressing an opinion about the actions – and inactions – of our government and reminding elected representatives why we entrusted them with their authority in the first place. Only by telling our stories and asserting our legislative programs can we be heard. Dystonia’s continued eligibility for DOD research funding is one potent example of the tangible outcomes our sojourns to Capitol Hill produce. I urge patents, friends and families to heed an imperative for action that yields concrete results. Armed with determination and an email program, you can even make a difference from the comfort of your home.

Dystonia Advocacy Day, April 9, 2014
Capitol Hill, Washington, D.C.
Dystonia Advocacy Network Legislative Agenda, FY15

  • National Institutes of Health (NIH) appropriation of $32 billion to allow continued funding of important research programs.
  • Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition.
  • Inclusion of Dystonia as a condition eligible for study in the Dept. of Defense (DOD) Peer-Reviewed Medical Research Program.
  • Long-term solution to the Medicare Sustainable Growth Rate (SGR) formula that adequately reimburses physicians and ensures patient access to quality care.

The Dystonia Advocacy Network’s legislative agenda is found here:

Those with Parkinson’s can join forces with the Parkinson’s Action Network:

6 responses to “Communities In Action Achieve Results

  1. Pamela, I am inspired over and over again by you and your actions for announcing of the dystonia and to the better research in this area.

    • Franz, Always such a pleasure to hear from you. I would be remiss if I didn’t note all that you do for Dystonia. How wonderful to share our stories across the Atlantic! -Pamela-

  2. Always a joy to read your posts even if I don,t always reply.

  3. Thank you, Pamela, for your articulate and passionate call to action. It’s so important for each of us to make our voices heard.

    • Monica, Lovely to hear from you. Advocacy is such an important area of focus with the potential for tangible results. I must remark how empowering it is to make our stand in DC, especially with the low awareness of Dystonia. Enjoy the rest of your week. -Pamela-

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