Parkinson’s Nonprofits Shift Strategies to Adapt to the Pandemic

Parkinson’s Nonprofits Shift Strategies to Adapt to the Pandemic
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For our family and friends in the Parkinson’s community, spring and summer usually mean golf tournaments and 5K races, while fall and winter bring indoor dances and casino nights. But this year, those in the Parkinson’s community can’t come together for annual events because of the COVID-19 pandemic. We already miss the camaraderie.

In response, the nonprofit organizations and fundraising initiatives that usually bring us together are getting creative. I reached out to several leaders of Parkinson’s nonprofits and local event organizers to ask how they are using virtual events and social media to keep donors engaged this year.

Kate Harmon, a fellow member of the Parkinson’s community here in southern Pennsylvania, told me via email: “The cure won’t fund itself and Parkinson’s won’t wait for COVID to be over. … Now more than ever people want to help; they need to help. They want to feel good, they want to make a difference. We can adapt and find ways to help them help the people and causes they care about.”

Creative ways to fundraise

Harmon’s annual event, Shaken Not Stirred, which is a fundraiser for Team Fox and The Michael J. Fox Foundation (MJFF), brings local members of the Parkinson’s community together for music, food, and drinks. Harmon planned to expand the event this year to include a symposium for people with Parkinson’s and their caregivers. Instead, event organizers may offer “to-go” cocktails and an online format.

Harmon’s parents, Bob and Cecily Harmon, are also founders of a nonprofit called Parkinson’s Cure Research Funding. She said her parents had to cancel their 11th and final Golf for the Cure event, but golfers can still receive a golf bag of goodies if they didn’t refund their golf fee and the family reaches their fundraising goal.

Over the last 11 years, the family’s fundraising initiatives have contributed more than $500,000 to MJFF.

The annual License to Cure Parkinson’s Gala is also missing from my calendar, leaving me like Cinderella without a ball or a fairy godmother. Jodi Cianci, co-founder of the Philadelphia-based nonprofit Shake It Off, explained via email that this year she had to cancel the fundraising event her organization typically hosts.

Cianci also postponed the annual Philly Rabbit Run, a 5K/1-mile race at the Philadelphia Zoo typically held the day before Easter that draws over 1,000 participants from across the nation.

Cianci, who uses high-intensity interval training to manage her Parkinson’s, supports exercise research. She wrote, “We focus on our funds helping to advance awareness and research in the area of exercise. They have included: Michael J. Fox Foundation, Brian Grant Foundation, Cleveland Clinic, Dr. Jay Alberts’ research, and University of Delaware, Dr. Chris Knight’s research.”

Shake It Off has donated over $200,000 to the University of Delaware’s Exercise Neuroscience Lab, where Knight leads Parkinson’s exercise research.

The Michael J. Fox Foundation

As the largest nonprofit funder of Parkinson’s research, The Michael J. Fox Foundation has funded over $900 million in research to date, but the foundation is not impervious to the impact of COVID-19. I spoke with the senior vice president of development, Michele Golombuski, via Zoom about how the MJFF has navigated the virtual world.

Golombuski said that between March and September, more than 18,000 people have participated in free webinars about life with Parkinson’s and the foundation’s work to speed medical breakthroughs.

The Parkinson’s community is invited to celebrate 20 years of research progress — and 20 years closer to a cure — through a multitude of virtual opportunities over the rest of the year. The 2020 Fall/Winter Fox Focus on Parkinson’s newsletter highlights the foundation’s momentum in Parkinson’s research and its response to COVID-19.

Golombuski added that the MJFF has positioned itself to receive other streams of revenue. Following the cancellation of their annual Fox Trot 5K series, which was supposed to include eight live events across the country, the foundation created the first-ever virtual 5K/10K event.

Nearly 5,800 patients, families, and supporters in all 50 U.S. states, plus Washington, D.C., Puerto Rico, and 18 different countries, laced up for the Virtual 5K/10K. The community raised over $1.4 million, 100% of which will go directly to research.

However, just as the camaraderie is missing in local communities, the lack of social interaction is impacting larger organizations as well. According to Golombuski, “The personal connection is missing. An important element is getting to know people and gaining their trust so they know the Fox Foundation will do right by their generosity.”

We are resilient

Golombuski summed it up perfectly: “The Parkinson’s community is resilient. We have seen this in many ways but no more than in this pandemic. People have translated their amazing skill set and have moved it into a virtual space. And it is quite fun to see.”

What are you doing to stay involved? Please share your experiences this year in the comments below. 

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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When Lori discovered at 45 that she had young-onset Parkinson’s, she struggled with her diagnosis but decided to attack it with the same tenacity, passion, and care she brought to her career as an engineer, marriage, and motherhood (of 3 boys). Now, at 52, Lori is also a writer, a Rock Steady Boxing Coach, and a personal trainer pursuing her passion of empowering others with Parkinson’s. She hopes her column, “Life, Lemons & Lemonade,” exemplifies something she learned from dancing with her husband, Mike: ”It’s not important HOW you dance. It’s THAT you dance.”
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