Last fall, The Michael J. Fox Foundation’s “Tell Us Your Story” Facebook campaign rallied voices across the Parkinson’s community, encouraging them to share their unique stories with others.
The campaign challenged individuals to post their stories and share them with friends and family before year-end. Every “like” or “share” a story received by December 31 would garner a $5 donation to MJFF, up to $60,000, courtesy of pharmaceutical company UCB, Inc. The social media marketing firm Syncapse donated their services to develop the Facebook application at no cost, so every dollar raised went directly to the Foundation’s research programs.
“When someone has the opportunity to share their story, it can be an invaluable service to someone going through the same experience and realizing they are not alone,” Laxmi Wordham, chief digital officer, told Neurology Now in December.
Within three weeks of the campaign’s launch, the PD community resoundingly answered the call — over 200 stories were shared more than 18,000 times.
Says Bryan Roberts, “Once you receive the diagnosis, there are really two roads you can choose. You can allow the disease to win and lead a diminished life or you can continue to achieve your goals while serving as an advocate for greater funding and research. I decided to take option number two and have not looked back.”
While the fundraising challenge has ended, the “Tell Us Your Story” app remains live on the Foundation’s Facebook page. As Neurology Now reported, “…the money raised by the campaign is a powerful resource in the fight against the disease. But just as powerful are the stories themselves — and the way in which they can unite and inspire members of the PD community.”
Facebook groups are proving valuable for connecting people with Parkinson’s across the country and the world. Bret Parker, a member of Team Fox and MJFF’s Patient Council, launched his own Facebook group for the young-onset Parkinson’s (YOPD) community. Discussions range from disclosure and dealing with workplace issues to clinical trials and treatment options. “Having met so many exceptional YOPD patients who grapple with the same things I do, I wanted to leverage technology to bring us all closer together so we could compare notes and support each other,” Bret says.
No matter what your story is, you are not alone. Join the conversation and connect with thousands of others in the Parkinson’s community at: