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Parkinson’s research advocate joins PHS Hall of Fame

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A woman who championed Parkinson’s disease research is one of three new honorees in the Poway High School Hall of Fame.

Joan Samuelson, class of 1968, joins journalist and surfer Jim Kempton, class of 1969 and Charley Hoffman, professional golfer and class of 1995 as this year’s honorees.

Samuelson is best known for her tireless work in bringing awareness to Parkinson’s disease and helping pass a bill that lead to stem cell research into a cure for the disease.

Samuelson herself was diagnosed with Parkinson’s disease in 1987.

“I was very touched and honored (to be named to the Hall of Fame),” said Samuelson. “It’s been a very long time since I was there, but Poway is in my heart. It is a part of who I am. It really touches me and I’m very proud (to be in the Hall of Fame).”

Samuelson had a career practicing law when she was diagnosed in 1987. She threw herself into advocating for Parkinson’s research. “When I got over the shock of my diagnosis, I started looking around to see what was going on with research and what I should do to help. I’ve always responded to big challenges in my life by doing something.”

Samuelson said that she was horrified to find out that there basically wasn’t anything being done to find a cure for Parkinson’s disease. “I found a little bit of money being spent by the government, but no kind of high-tech, modern research,” she said. “There was lots of focus on things like breast cancer and not much on Parkinson’s.”

The first support meeting for people with Parkinson’s disease Samuelson attended was in San Diego, while she was here visiting her parents. “I brought my mother along,” she said. “It was a big group of people gathered with nothing going on.”

Samuelson said she found the attitudes of people about Parkinson’s to be “patronizing and controlling.” “A lot of it was denial,” she said. “People made jokes, but I knew it was no funny thing. My grandfather died of Parkinson’s ... I knew someone had to take it seriously and they weren’t.”

Four years after her diagnosis, she founded the Parkinson’s Action Network (PAN), which remains to this day a leading advocacy network for Parkinson’s disease. Under her guidance, PAN began focusing on funding for research and quality-of-life issues for those living with the disease. Samuelson served as president of PAN until 2006 and served as a board member until 2008, when her health caused her to retire.

This advocacy led to Samuelson testifying before Congress several times about the importance of funding for stem-cell research, which she believed was the best route to finding a cure for Parkinson’s disease.

Samuelson was part of the campaign for Proposition 71 in 2004, that created the California Institute for Regenerative Medicine (CIRM), where she served as patient advocate until a fall in October 2013 led to her resignation.

“I did my share,” said Samuelson. “I worked like a maniac for several years, but I had to address my health. I left (PAN) and went to CIRM until I fell. Now I’m recovering and seeing what role I can play in the future.”

Samuelson said she hopes she can attend the dinner honoring her and her fellow inductees, but isn’t sure her health will allow it. “I’d love to be there, but travel and long days are difficult for me,” she said. “We’re trying to figure it out. It would be great fun to be there.”

The three alumni will be honored at a dinner from 5:30 to 8:30 p.m. Saturday, May 30 at The Country Club of Rancho Bernardo, 12280 Greens East Road. Tickets are $35 and are available online at powayhighfoundation.org/hall-of-fame.html. The event includes a buffet dinner and a no-host bar.

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