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Sharing a Story and a Cause

March 9, 2021 by Elena Conway

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).

Two women stand on a small stage with a microphone, one looking out to the audience and the other watches her speak.
“We had people that were giving two and three times. It was just amazing and beyond generous,” says Kim Pryce (right), who with her sister Erin Pryce (left), led a virtual campaign that surpassed its initial $25,000 goal.

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.”

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.

Erin Pryce Johns Hopkins Huntington's Disease Center Advisory Board member

Family, friends, and coworkers shared the video through their networks when the online campaign launched in late November, leading to “a tsunami of gifts.” By early January, the sisters surpassed their initial goal by $2,500.

“We had people that were giving two and three times,” Kim says. “It was just amazing and beyond generous.”

The Johns Hopkins HD Advisory Board is now over 60% to its $250,000 fundraising goal to provide clinical and research support to the Huntington’s Disease Center. Erin and Kim hope that their experience will be a model for others using virtual tools to thrive in a digital landscape until it is safe again for in-person events.

“You have to start with a cause and a story, and you need someone brave enough to tell that story. Erin could be doing anything she wants with her limited and valuable time, yet she chooses to help others. I am so proud of her and am in awe of her courage,” Kim says.

Erin and Kim will continue to provide donors with updates on the study’s progress so that they can see the tangible results of their contribution. Erin has also launched a website for people to follow her family’s fundraising efforts, noting that promoting Hopkins’ pilot study was “just the tip of the iceberg.”

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