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Dystonia Advocates’ From Across the Country Convened in Washington, D.C. By Jeff Shair

26 Sep

It was an honor and a privilege that I was asked to represent the NSTA this year for Dystonia Advocacy Day. Representatives from Dystonia Advocacy Network (DAN) assembled in Washington on Capitol Hill for the purpose of bringing awareness to the cause and to lobby for more funds for the disorder. In actuality, it was a two-day event that took place from April 12-13. On the first day of the meeting, we were trained how to advocate to our legislators or their representatives. The second day, which was Dystonia Advocacy Day, the attendees went to Capitol Hill and talked to their politicians or members of their staff.

We were briefed on Tuesday about the issues that needed to be addressed with the legislators on Dystonia Advocacy Day. First and foremost was an increase in funding for the National Institutes of Health to 34.5 billion for the new fiscal year, which as a result would provide more research into diseases such as dystonia. Additionally, we wanted to urge our Congressmen and Congresswomen to pass bills HR 1600 and HR 3742. Bill HR 1600 would put a cap on treatments and other expenses for dystonia to $250.00 per month, while Bill 3742 would permit non-profit organizations to donate money to groups like the National Organization for Rare Disorders, which would provide additional monies for dystonia. Finally, we advocated to keep dystonia on the 2017 list as a condition eligible for study through the DOD Peer- Reviewed Medical Research Program. In the wake of the event I am glad to report that proposal has already been approved. All of the participants at the meeting received this good news in an email from the Executive Director of the Medical Research Foundation, Janet Hieshetter, who also served as a Dan Steering Committee Member at the event. Although all these talking points were essential in our conversations with the politicians and their staff members, we were also encouraged to tell our personal stories about living with dystonia, which had significant impact on the politicians’ decision making.

After the briefing on Tuesday we were told that the group was going to be divided up by two states, our own and another state in close proximity. We first met with our team at dinner that evening, and I felt very comfortable talking to the advocates from Pennsylvania (I am from Philadelphia, PA) and New York who were accompanying me during my visit to Capitol Hill with on Wednesday. After the meal all of the advocates at the meeting gathered in the hallway outside of the ballroom for a group photo. Subsequently, I got the chance to talk at length with NSTA Vice President, Diane Truong.

Mary Rae Nee led the group from Pennsylvania. She is an extremely caring person, and she went out of her way to assist me throughout the event. Mary, despite her struggles with dystonia, runs a dystonia support group in Pittsburgh, PA and members of her group not only come from that city, but from the entire western portion of the state. Since our goal was to engage as many legislative offices that were scheduled for our team, we decided for the morning to split up according to the states that we represent. Therefore advocates from Pennsylvania and New York went to their legislative offices, respectively.

Our first visits were to the offices of Senator Pat Toomey (R-PA) and Senator Bob Casey Jr. (D-PA). We met with their staffers and they listened to our concerns intently. Moreover I was amazed that Douglas Hartman, staff member from Senator Casey’s office, not only remembered me from when I met with him three years ago, but he recalled that I was a movie critic in college! On that visit three years ago, I went with a team to Capitol Hill advocating for mental health issues while I was attending the Mental Health America Conference. The legislative staffers’ schedules are full with meetings with various advocate groups from across the state during the course the day, and I was astonished that he remembered intricate details about my life.

In the afternoon, we joined the New York advocates’ and went with them to their legislative offices. Most of the staffers we saw that day were immensely supportive of our concerns; especially because funding for dystonia and other related diseases is a bi-partisan issue. Hopefully our talking points and personal stories will compel the Senators and Representatives into making dystonia a priority. I want to thank Justin and the entire staff of the NSTA for giving me the opportunity to represent the organization on Dystonia Advocacy Day in 2016. I am very grateful for my experience that I had in Washington, D. C.