“It’s easy to allow a chronic illness to take over a family’s life,” she says. “So you try to keep life as normal as possible, as long as possible.” Adds her husband, who has had Parkinson’s for over 30 years, “I may live with it because I have to — but I haven’t let my disease define who I am.”
The couple of 46 years, who prefer to remain anonymous, first became involved with MJFF not long after its doors opened. An attorney, he was diagnosed while still in his 30s, at a time when there was little or no awareness of young-onset Parkinson’s disease (YOPD). She was an educator, and their son was still in elementary school. It could be difficult, at times, to keep family life normal. She says, “It’s not easy to have a parent with this disease. Our son couldn’t play catch with his father, and that was hard on both of them. But today we’re so proud of how sensitive he is to helping others.”
Since their retirement, they’ve been able to spend more time with their son, who now has two young children of his own (currently at “delicious ages,” according to their grandmother).
Today, they stress the importance of finding a movement disorders specialist, especially for the newly diagnosed. “We’ve seen what a difference this makes, both through our experience and that of our friends — now that we’re at the age when people are typically diagnosed,” he says.
When The Michael J. Fox Foundation was launched, Parkinson’s had already been a part of this family’s life for almost two decades. They tuned in immediately to his announcement, along with the rest of the nation and the world. “It’s been incredible to see the attention Michael and his Foundation have brought to this disease,” she says.
“A friend invited me to join her at a Research Roundtable the Foundation was hosting,” she continues. “I was so impressed with what I heard — the research, the approach and the people. We became contributors early on.” Since their first gift of $20 in 2002, they have increasingly supported the Foundation each year.
Last year, the timing was right for them to make a significant contribution. He says, “The Foundation has always been a highly responsible steward of our contributions. They demand accountability from researchers and themselves.” His wife adds, “Behind any charitable gift is someone who’s worked very hard. Giving to MJFF, we’re confident our money is working just as hard to develop improved treatments. The Foundation understands Parkinson’s as a complex disease, and for that reason, they leave no promising stone unturned. They’re pursuing multiple targets and working with teams all over the world to speed progress.”
As they’ve watched the Foundation evolve, the couple has especially appreciated the development of Team Fox. “When an illness comes into a family, people want to make something good out of the bad,” she says. “Team Fox has enabled thousands of people at all ages to contribute in big and small ways. We’re grateful to the Foundation for giving the community a platform to advance research and feel empowered to help their loved ones with PD.”
While they are modest about their philanthropy, family and friends have noticed their belief in The Michael J. Fox Foundation. And whether by directing gifts to the Foundation to mark important life events or by joining Team Fox, their loved ones have been inspired to get involved, too. “It’s meant so much to our family,” she says. “It’s a way for them to pay tribute to my husband.”
As anyone touched by Parkinson’s knows, the disease affects the entire family. “While there may be one million people with PD in the United States,” she says, “millions more are impacted. The sooner we can find better therapies, the sooner all of our lives will return to normal.”
“Every day, you choose your own path,” her husband adds. “You take control.”