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Around and About the Community

Raising Funds for PDF: By Sea...

The Saugatuck Harbor Yacht Club (SHYC) in Westport, Connecticut, hosted 150 people on Saturday, September 24, for a charity fundraiser and auction to benefit the Parkinson's Disease Foundation (PDF). This event was created to honor a past Commodore of the club, Stephen M. DeLay, who lives with Parkinson's disease. And honor Steve the guests certainly did, by raising a total of more than $40,000 to support PDF's research programs!

As friends and supporters of the DeLay family sat down to enjoy a fabulous spread prepared by a small army of talented and industrious volunteers, Steve's wife Kristine explained the purpose of the evening. She shared her family's personal struggle with Parkinson's, and how it has affected every aspect of their lives - from raising their son, Stephen Jr., now 11 years old, to meeting career challenges. She also spoke of the haven that SHYC provides for Steve, an enthusiastic sailor.

Kristine also gave special thanks to Dr. Lucien Côté, Steve's physician at Columbia University and a close associate of PDF for more than 40 years. She credits Dr. Côté with helping the family to treat the disease together and said that "he has truly become our partner." She concluded by reminding the crowd that in addition to honoring Steve, the purpose of the evening was to support research to find a cure for Parkinson's. PDF was also represented at the event by its Executive Director, Robin Elliott, who thanked the guests for all they had done to make the evening such a splendid success and announced that all proceeds would be used to establish the Stephen M. DeLay Fund for Parkinson's Research.

Following the dinner, guests enjoyed a live band and dancing while keeping an eye on their bids in the silent auction, which included sailing lessons and the use of private homes in the Dominican Republic and Maui. Several of the most profitable items were works of art made by club members, including a decorative wooden box built by Steve and painted by artist Susan Russell, and a painting of four club members' boats rafted together, created by Doug Leigh, a long-time friend of the DeLay family.

PDF thanks SHYC for hosting the benefit, which was the first charity event ever to be held at the club. Especially appreciated was the hard work of John Decker, the event coordinator, and his excellent committee. Special thanks are also extended to the DeLays for their remarkable spirit and contribution to Parkinson's research.

...And by Land

As Sean Stewart enters his senior year of high school, a million things must be on his mind - graduation, college, future career choices. But since his freshman year in 2002, his focus at the beginning of the school year has been on the 5K race that he created, called Cursus Cerebro, or "race for the brain." Sean, a Latin scholar, sees this event as one of his most important undertakings to help raise funds for and awareness of Parkinson's, a disease that his father, John, has lived with for years. And each year, his success grows - the Fourth Annual Cursus Cerebro shattered all of the previous records by raising almost $11,000 for PDF (and still counting)!

After several straight days of rain, some 75 runners were pleasantly surprised as they gathered on Saturday, October 15, at Sherwood Island in Westport, Connecticut, to find the sun shining. Runners included friends of the family, the cross-country team of Sean's younger sister, teachers and many others who came out to conquer the 5K course and to "make strides" towards a cure for Parkinson's.

"The most amazing aspect of the run was the truly genuine atmosphere: everyone knew why they were there and wanted to be there. Everybody respected the cause," said Sean. "There was an indescribable sense of vitality that was so much more than just the release of cabin fever. These people were there to help fund important research in Parkinson's."

The success of this year's run has made Sean determined to continue the event next year, when he expects to be in college. Luckily, he leaves much of the work in the capable hands of his sister, Keara, who is ready to assume leadership on the home front.

PDF extends many thanks to Sean, and the entire Stewart family, for their dedication and conviction to help find a cure for Parkinson's disease. It is our pleasure to report that in the last four years, Sean's efforts have raised more than $32,000 for the John H. Stewart Fund for Parkinson's Research. Congratulations, Sean and all the Stewarts!

NINDS Gives Scientific Press Briefing on Parkinson's Disease

On October 20, science reporters from across the country participated in a special briefing on newsworthy developments in Parkinson's research and treatment. The briefing, which was organized by the National Institute of Neurological Disorders and Stroke (NINDS), featured a panel of prominent Parkinson's scientists and community members. It was scheduled at this time to alert the news media to the forthcoming World Parkinson Congress (WPC) that will be held in Washington, DC, February 22-26, 2006. Reporters participated in person and by telephone.

The panel of experts was led by Dr. Diane Murphy, Program Director in the Neurodegeneration Group at NINDS and in effect the chief point-woman on the government's Parkinson's research program. She joined Dr. Story Landis, Director of NINDS, in opening the session, welcoming the press and introducing the speakers.

The first speaker, Dr. J. Timothy Greenamyre, of the University of Pittsburgh Medical Center, provided background information and discussed the possible role of environmental toxins, such as the frequently-used rotenone, in the development of Parkinson's. He was followed by Dr. Robert L. Nussbaum, a leading genetics scientist at the National Human Genome Research Institute, who talked about how Parkinson's is not likely "one" disease with a single, determinable cause that acts the same in every person, but is probably a complex condition with multiple causes that appears differently in different people.

Dr. Peter T. Lansbury, Jr., of Brigham and Women's Hospital in Boston, began with a brief survey of what is known about the causes of Parkinson's, then continued with a discussion of the current discovery process of PD drugs. He said that Parkinson's drugs take a great deal of time and money to develop, and that creating federal incentives for pharmaceutical companies who take the initiative in innovation for Parkinson's treatments - such as the tax breaks that are given to the developers of drugs that treat "orphan" diseases - could accelerate the pace of drug development. He was followed by Dr. Clive Svendsen, of the University of Wisconsin-Madison, who gave an overview on future therapeutic approaches including the hot topic of GDNF, the growth factor that many scientists believe could be the next big thing in Parkinson's treatment.

To round out the discussion, Dr. Monique Giroux, of The Cleveland Clinic Foundation, presented ideas for treating Parkinson's with a team approach that fosters a patient-centered model of care. This ensures that equal emphasis is placed on addressing movement symptoms and maintaining the patient's quality of life. Then Morton Kondracke, the prominent journalist who is the author of "Saving Milly," a best-selling book that was later converted into a highly-praised television documentary, provided the caregiver's perspective while moderating a question and answer session.

The two-hour press briefing ended with a reminder of the upcoming World Parkinson Congress and the value of attending this unique conference. For more information on the WPC, please visit www.worldPDcongress.org.

A Stroll Through the Forest

In a different take on the standard walk-a-thon, the Parkinson Association of the Carolinas presented Team Walk for Parkinson's Disease, a leisurely stroll through beautiful Ribbon Walk, a botanical forest in Charlotte, North Carolina. More than 125 people gathered on Saturday, October 22, to participate in the walk and enjoy a southern barbecue feast while treating their ears to blue grass music.

In recognition of the difficulties that walking can create for people with Parkinson's, this walk did not set a goal for distance. In fact, a number of attendees opted not to walk, and instead enjoyed the atmosphere while children played soccer and football and had their faces painted. Everyone's contribution, whether it be walking or simply attending, was demonstrated by the $10,000 that was raised to continue the Association's work of providing support, education, referrals and patient assistance.

"This is my second year coming to this event to volunteer and bringing my family and friends to support me," said Melissa McNamee. "I was diagnosed with Parkinson's at 21 years of age and have had it now for almost 16 years. My goal is to let people know, through this event, that I am not going to let this disease get me down, but fight until a cure is found!"

The Parkinson Association of the Carolinas is a non-profit organization that is based in Charlotte, North Carolina. The Association serves people with Parkinson's disease and their families in North and South Carolina.