Sharing a Story and a Cause

Sisters’ online fundraiser surpasses goal for Huntington’s Disease research

When Kim Pryce, head of the Johns Hopkins Huntington’s Disease Center of Excellence Advisory Board, told her sister and fellow board member Erin Pryce that they would raise $25,000 to fund a pilot study, Erin was in disbelief.

“I said, ‘Kim, that’s too high. We’re never going to get that,’” Erin remembers.

Until November 2020, Kim and Erin’s fundraising experience was primarily with the Huntington’s Disease Society of America (HDSA). Amongst family and friends, they’ve raised $7,000 annually since 2015 through the organization’s Team Hope Walk campaign, which provides financial assistance to people with Huntington’s Disease (HD).

The $25,000 goal Kim set her eyes on for Johns Hopkins would support a pilot study using functional magnetic resonance imaging (fMRI) to investigate effective treatments in pre-symptomatic HD patients. To increase awareness of the goal, Erin, who learned of her own HD diagnosis in 2015, shared her family’s multi-generational battle with the brain disorder on social media.

Erin and Kim’s grandmother was diagnosed with HD in 1977. A fatal neurodegenerative disease like Parkinson’s and Alzheimer’s, HD often begins to affect people between their 30s and 50s, leading to a loss of physical coordination and mental cognition, as well as emotional disturbances. Children have a 50-50 chance of inheriting it from a positive parent, and doctors diagnosed the sisters’ father, Jim, and their uncle with HD.

Jim Pryce’s HD symptoms accelerated after a concussion, and he passed away from the disease in 2015 surrounded by his daughters. Erin and her three older sisters would all also be tested for HD. Only Erin tested positive.

“It was after our father passed that we really decided to become active in the HD community,” Kim says. “We thought, ‘How can we help?’”

At an HDSA fundraiser in 2018, the family reconnected with Jim’s social worker from Johns Hopkins, who invited Kim to join the Johns Hopkins Huntington’s Disease Center’s newly established advisory board. Since then, Kim says the Pryce family’s fundraising efforts “have snowballed.”

They and fellow advisory board members hosted a new event for the Johns Hopkins HD Center, called “A Toast to Hope,” held at Boordy Vineyards in Maryland in 2019. Kim then became leader of the center’s advisory board in 2020 and welcomed her sister Erin on as a member. Even during the COVID-19 pandemic, the sisters received questions about their fundraising initiatives. To spread the word about the Johns Hopkins fMRI pilot study, Erin again shared her story on social media.

In a video, she talks about her own experience with HD in light of the COVID-19 pandemic and the exciting possible outcomes of the pilot study, such as leading to earlier treatment of HD.

“Twenty-twenty was awful for everyone,” says Erin. “But I’ve also been coming to terms with being in the early stages of HD’s symptoms. To not be able to go out and live the last few healthy years the way that I want to has really been terrible. I wanted to do something to turn that around, and the fundraiser was a way out of that rut. It actually gave me hope.”