Yours, Truly--A Multicultural Storytelling Campaign--Launches to Bring Awareness to Nonmotor Symptoms of Parkinson Disease
A multicultural storytelling campaign, Yours, Truly , sharing the personal stories of people with Parkinson disease (PD), has launched. The aim of this campaign is to bring greater awareness and understanding of the nonmotor symptoms of PD and how these symptoms affect individuals with PD. Created in collaboration with StoryCorps and Acadia Pharmaceuticals (San Diego, CA), Yours, Truly will give people with PD the opportunity to record, archive, and share their personal stories about living with PD. The site is bilingual, in Spanish and English, and provides educational materials about PD in both languages.
StoryCorps has a longstanding history of working with individuals with chronic disease to share their stories and drive awareness and understanding. In a 2020 survey of StoryCorps participants, 94% felt comfortable sharing personal information, and more than half thought they would be more comfortable sharing with others in the future. Notably, 91% of survey respondents said that listening to others' stories helped them understand people experiences different from their own.
Dr. Gus Alva, Assistant Professor at University of California, Riverside Medical School, Department of Neuroscience said, “I am a bilingual (Spanish) physician who works with patients across cultures, and I believe that sharing personal stories about loved ones living with PD may increase awareness of the symptoms while also helping reduce the stigma associated with the disease. As a result of hearing the experiences of others, patients and caregivers may be more inclined to ask for support and discuss potential treatment options.”
"We are excited to collaborate with Acadia Pharmaceuticals on the Yours, Truly campaign," said Alissa Pelc, Managing Director, Corporate Partnerships at StoryCorps. “This work will build upon StoryCorps’ long-standing commitment to providing people with serious illness, and their loved ones, the opportunity to record and share their voices and stories—ensuring that the varied experiences of the PD community will be preserved for generations to come.”
Yours, Truly encourages people with PD to submit their stories to this campaign at https://www.YoursTrulyPDP.com. Physicians can be a part of this campaign by encouraging their patients to participate in this and other advocacy efforts. Such participation in advocacy has been shown to positively affect patients and clinicians' quality of lives.
In the future, the Yours, Truly campaign hopes to extend access to this program with their MobileBooth, which is an Airstream trailer that crisscrosses the country year-round to record stories in person.