When I was a little girl, my mom taught me the importance of showing up for the party. Boy, was she right!
As I muse over my experience at Dystonia Advocacy Day, I ponder the significance of our actions. While we volleyed many an impassioned speech, I can’t help but wander to the conclusion it all comes down to showing up. Implanted with medicine pumps and medical devices, toting our loathsome pills, a few sporting motorized scooters or walking sticks, Dystonia hailed to D.C. armed with an arsenal of war stories to announce our presence.
Tasked with a day of legislative sorties on Capitol Hill, putting ourselves out there is no small matter. Showing up means summoning the courage to relive our most traumatic moments with a series of strangers, some paying only polite attention to our deepest frustrations. Showing up means risking an emotional bottleneck that messes with the best-rehearsed oration. It entails listening to nasty words like “sequestration” and watching life issues we battle every day transformed into talking points in a gridlocked budget process. Showing up denotes enduring a hectic, stressful schedule that wrecks havoc with our Dystonia for the same cause. It makes a simple but profound statement how we need help from our government to enjoy our freedom to move. Showing up is worth 1,000 pictures times 1,000 words…I can only hope mine were fully understood but I know my attendance was duly noted.
I must give mention to Team NY, which certainly “showed up” for business. After lending 2 of our crew to switch-hit for NJ, we comprised 3 Dystonia ladies, 1 husband and 1 father determined to wield our expertise. After all, Congress has much to learn about Dystonia. We opened our hearts, laughed our way through our emotions, swooped in to support one another, even caught a ride on the exclusive underground train. Talk about tired; by the end of the day, we could barely remember our personal details!
Here’s to fellow troopers Allison London, Ron Hersh, Denise Gaskell, Greg Gaskell, and members in absentia, Rachelle Robert and Christina Pepi, who were with us in spirit. Traipsing through the Halls of Power with the top soldiers in the state made my day!
If you plan to change the world – or even one small corner – start by showing up for the party!
- National Institutes of Health (NIH) appropriation of $32 billion, a necessary increase to allow continued funding of important research programs.
- Active support for the Dystonia research portfolio at NIH including the Dystonia Coalition and participation of Dystonia researchers in the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.
- 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.