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Around & About the Community
Benjamin Shows Us the Light of Day
Music promoter and friend of the Parkinson's Disease Foundation (PDF) Bob Benjamin has done it again! Over a three-day weekend in early November, fans and friends packed The Stone Pony club in Asbury Park, NJ for the fifth annual "Light of Day" concert, a music fest that benefited PDF and one other charity. This year, the event raised over $60,000 for PDF.
The concert has grown over the years, from a private 40th birthday celebration for Bob in 1998 to the spectacular weekend 2004 party that drew hundreds of music lovers. Bob was diagnosed with Parkinson's in 1996.
Bruce Springsteen once again made an unannounced appearance at the event with headliners Joe Grushecky & the Houserockers (a group that Bob manages). Bruce rocked The Pony for more than an hour and a half with Grushecky, his musical and songwriting colleague from Pittsburgh. Among other highlights of the weekend were performances by Pat DiNizio from the Smithereens, La Bamba And The Hubcaps, Shane Fontayne, Willie Nile, Boccigalupe and The Bad Boys and Joe D'Urso & Stone Caravan.
Especially touching were the moments when musicians related their personal experiences with Parkinson's disease, and spoke of how important it is to work for the cure. Bob urged the crowd to push their elected officials on such issues as stem-cell research and healthcare, both of which are hugely important to the Parkinson's community. He also thanked the crowd and told them that "working together, we can find a cure for Parkinson's and related diseases."
PDF extends its heartfelt thanks to Bob Benjamin for his hard work, dedication and generosity, as well as resounding "congratulations" on another great show. May the "Light of Day" continue to shine hope and promise on Parkinson's research to find a cure!
Advocates Rally on Capitol Hill
On Tuesday, February 8, 300 members of the Parkinson's community - the largest group of Parkinson's advocates ever to gather in Washington, DC - fanned out among Congressional offices to present a clear message to Congress on such issues as funding for scientific research and the exploration of essential scientific avenues including stem-cell research. The traditional "day on the hill" - it included a record 200 legislative visits! - was the culmination of the Parkinson's Action Network's (PAN) 11th Annual Forum, a three-day conference on scientific developments and advocacy training.
First-time attendees and experienced forum-goers alike worked together to familiarize themselves with PAN's Action Agenda and to strategize on the best way to present it to Congress. This year's agenda focused on increasing appropriations for the National Institutes of Health (NIH), and for the Parkinson's-related research currently being done through the Department of Defense's Neurotoxin Exposure Treatment Program (NETRP) (for more information, see The Voice from Washington on page 8). A highlight of the training was a talk by NIH Director Dr. Elias Zerhouni. Dr. Zerhouni's presentation, entitled "Parkinson's Disease: New Strategies at the National Institutes of Health," provided an overview of the current status of NIH funding and federal research priorities in Parkinson's disease at the NIH.
The Forum concluded with the Louis Fishman Advocacy Awards dinner, a special opportunity for PAN to recognize exemplary leaders in the community. This year, the Louis Fishman Advocacy Award was presented to Linda Herman, PAN's State Co-Coordinator for New York and a long-time champion for the Parkinson's disease community at both national and grassroots levels.
Another award, this one named for Murray Charters, the legendary Parkinson's advocate from British Columbia, was presented to Len Casavant. Len is PAN's State Co-Coordinator for South Carolina and also hosts the radio program, Travels With Parkinson's, which features live talk, oldies, easy listening and analysis on Parkinson's disease. Listeners can tune in to Len's radio show by pointing their Internet browsers to www.live365.com/stations/travelswparkinsons.
For more information on the Forum and PAN's Action Agenda, please visit www.parkinsonsaction.org. If you were unable to attend this year, you can view a webcast of the Forum on the PAN website. This medium was made available this year for the first time through a generous donation from the Charles and Vivian Sukenik Philanthropic Foundation.