The Parkinson's Foundation Was Bracing for the Worst in 2020. Instead, Giving Surged

In March of last year, John Lehr, president and CEO of the Parkinson’s Foundation, fully expected 2020 to hit fundraising lows. The world was going into coronavirus shutdown, work and the economy were stuttering, and no one knew how bad the pandemic would get or how long the disruption would last.

“Based on discussions I was having with colleagues in other disease-specific organizations, I really thought fundraising would be anywhere from a third to half of what (it was) the prior year,” Lehr said. “But by the end of the summer, it wasn’t as bad as we thought.”

In fact, by the end of the year, the Parkinson’s Foundation was actually ahead of the previous term in fundraising—way ahead. Although the total number of individual donors had shrunk by about 10%, some who remained increased their contributions, such as the longtime contributor who had been giving $5,000 annually but unexpectedly raised that number—to $1.3 million. “By the time January came around,” Lehr said, “I was telling my board we’re going to have significant extra funds to spend.”

As it happened, it was $10 million in extra funds, 20% more than the previous year’s approximately $40 million in grantmaking. Lehr said the foundation was able to fund programs that he’d feared the organization would need to back-burner. But the strong fundraising year led to the Parkinson Foundation’s recent announcement of an additional $10 million for research, care and education programs for Parkinson’s causes, including work to reach long underserved communities.

The newly announced funding includes an expansion of the foundation’s PD GENEration program, a global initiative that provides no-cost genetic testing and counseling to people with Parkinson’s, in both English and Spanish. Included is funding for more outreach to bring in Hispanic and Caribbean communities, which have been historically underrepresented in Parkinson’s clinical trials. The foundation is also expanding its research grants by funding additional Impact Awards, which are designed for new and established researchers in Parkinson’s disease.

The Parkinson’s Foundation’s unexpectedly strong 2020 fundraising is not unique to that organization. Data is showing increased charitable giving overall and more new donors last year, likely shaped by some combination of their impulse to respond to the pandemic and calls for social justice, and perhaps an overall boost in altruism. In addition, although many Americans struggled financially during the pandemic, the stock market was soaring through the latter part of 2020, and comfortably wealthy people got even more comfortably wealthy, and so had the means to give and the tax incentives to give more than usual. Of course, there was also a lot more need in the past year, plus challenging constraints on fundraising, meaning nonprofits and fundraisers did struggle during a tumultuous year. But many are reporting steady or increased funding.

The Parkinson’s Foundation may not be the first funder that comes to mind for this neurodegenerative disease, but it’s actually one of the oldest—in a sense. It emerged in its current form in 2016 through the merger of the National Parkinson Foundation and the Parkinson’s Disease Foundation, both of which had been founded in the 1950s. Lehr—who had previously worked for the Cystic Fibrosis Foundation, where he helped run fundraising efforts to bring in $175 million to advance research and treatments—was hired to run the newly named Parkinson’s Foundation. Over the last five years, Lehr and the foundation team built out a national footprint that doubled the organization’s fundraising. It supports research into the biology of the disease, treatments and cures, as well as quality-of-life care for people living with Parkinson’s.

These first decades of the 21st century appear to be a watershed era for Parkinson’s research and funding. The condition affects an estimated 1 million Americans and 10 million people worldwide, making it the second-most common neurodegenerative disease after Alzheimer’s. And it has drawn high-profile participants in philanthropy. One is Michael J. Fox: The actor’s eponymous foundation has directed an estimated $1 billion into Parkinson’s research since it was established in 2000. Another is Google billionaire Sergey Brin, whose Aligning Science Across Parkinson’s research initiative opened for business last fall with $161 million in grants, although Brin had previously funded Parkinson’s causes.

This is a time for funders to be optimistic about Parkinson’s and to continue to support research. For example, pharmaceutical companies are currently working on therapies that address two mutations involved in Parkinson’s. Although the mutations account for only about 15% of Parkinson’s cases, researchers have reason to believe drugs that address the genetic glitch may also help all Parkinson’s disease patients. That could be a game-changer for millions worldwide.

(Note: This post has been updated to correct an amount given by a longtime contributor. The correct figure is $1.3 million.)

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