A group of young onset Parkinson’s disease (YOPD) patients from around the world are launching a yearlong Facebook fundraiser to help others with the disorder attend the 6th World Parkinson Congress (WPC) in 2022.
Representing 11 countries, the 26 participants, including an advocate who doesn’t have the disease, hope to raise at least $50,000 to cover travel for up to 50 individuals to the international forum, to be held June 7–10 in Barcelona, Spain. Every dollar raised will go toward these travel grants.
Beginning this month, participants will host back-to-back two-week fundraisers through Facebook, covering all 52 weeks in 2022.
Most Parkinson’s patients are diagnosed in their 60s. Those diagnosed before age 50 are considered to have YOPD, also called early onset Parkinson’s. These patients, half of whom are diagnosed before they turn 40, make up between 10% and 20% of all Parkinson’s cases. Individuals who have both YOPD and a family history of Parkinson’s are more likely to carry mutations in certain genes associated with the disease.
In many cases, YOPD diagnoses come as individuals are navigating a career or raising children. That can be isolating, lonely, and overwhelming, which is why the YOPD advocates, most of whom have attended a past conference, want others to go.
“I am constantly frustrated by people telling me ‘you don’t look sick’ or ‘you’re too young to have Parkinson’s,’ ” said fundraising participant Heather Kennedy in a press release. “At the WPC, I never have to explain myself or feel embarrassed by my symptoms because I am surrounded by people who understand what I am going through. That sense of being a part of a larger community changed my perspective on living well with Parkinson’s. I want to share that experience with others who have not had the chance to attend a WPC yet. I want others with YOPD to be inspired to live better lives the way the WPC inspired me.”
Another participant, Rebecca Miller, was diagnosed with YOPD at 39. Two months later, the U.S. resident attended WPC 2013, which she said inspired her to live a full, rich life despite the disease.
“The conference is truly one of a kind — people with Parkinson’s, family, doctors and researchers all together sharing information, inspiring hope, and ultimately, working toward a cure for this devastating disease,” Miller states in her bio on the participant webpage. “I’m raising money for the World Parkinson Congress to give others with Young Onset the opportunity to attend. For a person with Parkinson’s, this is a life-changing opportunity.”
The idea for the fundraiser came about during the last WPC when Miller and Canada resident Larry Gifford, in an impromptu meeting with other patients, decided to do something to help more people experience the conference.
Drawing more than 4,500 patients, neurologists, scientists, clinicians, and care partners, the triennial WPC will include research and care updates as well as stories from patients. The format promotes topic discussion and interaction among attendees about real issues faced by those living with Parkinson’s.
Elizabeth Pollard, executive director of the World Parkinson Coalition, which hosts the WPC, called the congress the premier meeting for international discourse on Parkinson’s research, treatment and management.
“By providing a totally immersive Parkinson’s forum for researchers, healthcare providers and people with Parkinson’s, WPC 2022 enables a range and depth of conversations unlike any other Parkinson’s meeting,” she said.
“This fundraiser is an incredible initiative that was designed and led by people living with [Parkinson’s]. It shows how valuable and impactful the WPC experience is for delegates, so impactful that they want others with YOPD to experience the WPC themselves. It’s the ultimate pay-it-forward campaign and I am honored to be part of this innovative fundraiser and generous community.”
Those interested in joining the fundraiser may contact the WPC here.