Sea Foam: Government efforts give hope in Parkinson's battle

April 4, 2011 

  • Hilton Head Island Parkinson's Support Group: meets at 2:30 p.m. on the third Thursday of every month at Memory Matters, 117 William Hilton Parkway. Details: Adrienne O'Neill, 843-836-2727 or; Ellen Forwalk, 843-681-3096

    Bluffton/Sun City Parkinson's Support Group: meets at 3 p.m. on the fourth Thursday of every month at Bluffton/Okatie Outpatient Center, 40 Okatie Blvd., Suite 100. Details: Betty Eberle, 843-705-6578; Muriel Coleman, 843-987-3505

    Parkinson's Support of the Low Country: meets at 1:30 p.m. on the first Thursday of every month at Helena House, 1624 Paris Ave., Port Royal. Details: Greg Estes, 843-227-9463

Thanks to Adrienne O'Neill of Hilton Head Island for sharing her special insight into Parkinson's disease. April is Parkinson's Disease Awareness Month, and Adrienne shares the latest in the fight to conquer the disease.

She writes:

I am writing to let you know that I recently returned from the Parkinson's Action Network Forum in Washington, D.C., where, along with 300 other Parkinson's advocates, I learned about the latest scientific research being done on Parkinson's disease. I also heard from leaders in our field about the issues facing Parkinson's research funding and other related topics.

It was an exciting week, because Sen. Mark Udall, D-Colo., gave a keynote speech in which he told us he would be introducing the National Neurological Diseases Surveillance Systems Act the following day.

This legislation would create, for the first time, a database that allows us to learn who is affected by this debilitating disease and where there are geographical clusters. This would enable scientists to better understand the causes of multiple sclerosis and Parkinson's disease and help move us toward better treatments and ultimately a cure.

On the last day of the conference, I visited with Rep. Joe Wilson's deputy chief of staff, Melissa Chandler, to discuss important government funding issues around Parkinson's disease.

I'm very glad that I had the opportunity to talk with her about Parkinson's and its impact on me, my family (that has endured Parkinson's for three generations now) and the community.

During my meeting I asked if Rep. Wilson would be willing to join the Congressional Caucus on Parkinson's Disease. The caucus has introduced Parkinson's-specific legislation, supported federal funding for Parkinson's disease research and championed other legislative priorities.

I am very pleased to say that Wilson has indicated that he will do so. He would be the first South Carolinian presence in the caucus. As a Parkinson's Support Group leader and former hospice chaplain in Beaufort County, I can tell you that Wilson's willingness to be a part of this caucus is very meaningful to many local people.

I also visited the offices of Sen. Lindsey Graham, Sen. Jim DeMint, Rep. James Clyburn and Rep. Tim Scott. I asked each one to support and vote "yes" on the National Neurological Diseases Surveillance System Act and to support National Institutes of Health funding for biomedical research.

It was an exciting, productive and exhausting day.

I left Capitol Hill feeling very hopeful about the government and its response to the Parkinson's community and its quest for a cure.

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