Denying Denial, by Joel Havemann
| September 2010 Monthly Message
- Going Above and Beyond – September 22, 2010
- Policy Focus
- Comments from the Udall Dinner Committee
- Denying Denial, by Joel Havemann
- Bette and Buddy Levenson – A legacy that will not be forgotten
Like almost all of us, James Trussell lapsed into a heavy case of denial when he learned seven years ago that he had what he had regarded as an old person’s disease. At 37, he was barely half the average age of someone newly diagnosed with Parkinson’s. “Why me?” he inevitably wondered.
But unlike most of us, Trussell pulled his head out of the sand quicker than you could say “stem cell research.” He quickly became active in just about every Parkinson’s organization in northwest Georgia. In particular, he became Georgia State Coordinator with the Parkinson’s Action Network. He has made the Georgia grassroots program one of the most effective in the country. And, as if that weren’t enough, he and a colleague founded the first Parkinson’s support group in northwest Georgia.
“If I weren’t out there fighting Parkinson’s, I’d just be sitting at home in a rocker,” Trussell said. “I want to fight it every step of the way.”
This is why PAN is honoring him at its annual dinner in memory of Rep. Morris K. Udall on Oct. 6 with the Milly Kondracke Award for Outstanding Advocacy. The award is named for Milly Kondracke, who devoted herself to the fight against Parkinson’s and lost her life to the disease in 2004.
“James exemplifies the best qualities of all Parkinson’s advocates,” said Amy Comstock Rick, PAN’s chief executive officer. “Whether he is meeting with a support group, coordinating a fund-raising event, or building connections with other Parkinson’s advocates in different states, James is constantly moving and constantly making a difference for our community. He has endless amounts of energy….He serves as an inspiration for Parkinson’s advocates, and he certainly inspires everyone here at PAN.”
Trussell has two pet causes; stem cell research and a national registry of people with Parkinson’s. With PAN’s support, he has made headway on both.
Georgia was one of the few states that were advancing stem cell research during the presidency of George W. Bush because the University of Georgia had two of the cell lines that President Bush allowed to be used for such research. That didn’t sit well with conservatives in the state legislature, who introduced a “personhood” bill that would have granted full personal rights to embryos at the moment of conception. But that just made Trussell fight even harder on behalf of potentially life-saving stem cell research.
Then there is Trussell’s campaign for a national registry of people living with Parkinson’s, a step that for the first time would reveal how many Americans have the disease and provide clues about links between Parkinson’s and geography. Before Trussell and the other Georgia advocates went to work, none of Georgia’s 15 Members of Congress supported the bill. Now, five Representatives and both Senators have signed on. Trussell is also largely responsible for securing Senator Johnny Isakson as a Co-Chair of the Congressional Caucus on Parkinson’s Disease.
Among the converts was Phil Gingrey, a Republican whose district in the northwest corner of the state includes the city of Rome, where Trussell lives. Gingrey initially argued for establishing registries for many diseases; Trussell helped convince him that such an approach, no matter how high-minded, would be so unwieldy that it would end up helping no one.
Trussell said he and his fellow advocates began to wear Gingrey down when they showed him partial rosters of people with Parkinson’s, some of whom Gingrey knew. “We had to fight hard with him,” Trussell said. “It took some serious lobbying.” Trussell took no small satisfaction on September 16 when the House Energy and Commerce Subcommittee on Health approved and sent to the full committee a bill that would authorize a national surveillance system on Parkinson’s, multiple sclerosis and other neurological diseases. The subcommittee adopted the measure unanimously on a voice vote.
Organizing and communicating are nothing new to Trussell, who has organized the annual Southeastern Parkinson Disease Conference for the past five years. The fifth such conference opens in Atlanta nine days after PAN’s Udall Awards Dinner.
Trussell has ties not only to PAN but also to the other major national Parkinson’s groups. He is the Co-Founder and Chief Volunteer Officer of the Northwest Georgia Parkinson Disease Association, an affiliate of the National Parkinson Foundation (NPF). He is a former member of the Parkinson Disease Foundation's People with Parkinson's Advisory Council, and a multi-year committee member of NPF’s Young Onset Parkinson Network Conference, which he chaired in 2008. He also initiated a young-onset track in the annual Southeastern Parkinson Disease Conference which will incorporate the American Parkinson Disease Association and NPF co-sponsored Young Onset Parkinson Conference this year. Among his many other Parkinson’s related activities, he supervises one support group and facilitates five more.
Somehow he finds time to operate the insurance agency in Rome that his father started 20 years ago.