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NIH launches website for StoryCorps project

Jul. 28, 2016, 9:50 AM

The National Institutes of Health (NIH) is launching its Voices of the NIH Community website, which features a collection of StoryCorps audio recordings from patients, families, researchers, doctors, nurses, staff and volunteers in both the NIH and Vanderbilt University Medical Center (VUMC) communities.

The collaboration between StoryCorps, the NIH and Vanderbilt is a first-of-its-kind partnership for an academic medical center, recognizing persons who enable health care work while capturing and preserving the stories of those connected with the extensive and diverse NIH community.

A total of 18 40-minute stories were recorded in Vanderbilt’s Eskind Biomedical Library from April 22-24, 2015, and are catalogued in the National Library of Congress in Washington, D.C.

Six Vanderbilt stories are now edited and currently being featured on the NIH website, including:

• Billy Hudson, Ph.D., Elliott V. Newman Professor of Medicine, speaking with M.D./Ph.D. student Cody Stothers. Hudson and Stothers grew up 15 miles and 50 years apart, both with daunting challenges. Their pathways converged through educational opportunity and the Aspirnaut program.

• Blythe Corbett, Ph.D., associate professor of Psychiatry and director of SENSE Theatre, speaking with research participant Abby McNabb. Corbett has a NIMH-funded clinical trial of the SENSE Theatre intervention that aims to improve the social and emotional functioning of children with autism spectrum disorder (ASD). Abby has ASD and has participated in SENSE Theatre.

• Stephen Raffanti, M.D., professor of Medicine, and Beverly Byram, M.D.N., A.D.N., assistant in Medicine. Raffanti is the medical director and Byram a nurse practitioner at the Vanderbilt Comprehensive Care Center, which is a clinic for HIV/AIDS patients. They have worked together with HIV/AIDS patients since 1992, when so many patients were dying of HIV and the goal of treatment was to help them die with dignity. They discussed how working with this population has been their life’s work.

• E.B. Jackson and Reid Thompson, M.D., chair of the Department of Neurological Surgery. E.B. and Thompson have known each other since 2003, when he initially treated her husband, Todd, for a brain tumor. In 2013, Todd’s tumor recurred after 10 years of living cancer-free and he lived almost 11 months after his second diagnosis (glioblastoma). Thompson and E.B. discussed the patient-provider relationship and the importance of research.

• Buddy Creech, M.D., associate professor of Pediatrics, and patient Cole Christopher. Cole was born with an immune defect known as chronic granulomatous disease, putting him at risk for very specific infections. As he entered adolescence, he became highly noncompliant and, as a result, his infections worsened. He then developed what would become a potentially fatal infection of his spine. In the hopes of providing salvage therapy, Creech worked with colleagues at the NIH to see Cole and evaluate him for bone marrow transplant. They performed this risky transplant and he is now doing extremely well.

• Amanda Haynes, a cardiac sonographer at Monroe Carell Jr. Children’s Hospital at Vanderbilt, and Ann Kavanaugh-McHugh, M.D., associate professor of Pediatrics, Pediatric Cardiology, shared stories from their daily interactions over the past 13 years — funny, sweet, heartbreaking — but all inspirational. There are a range of patients seen in their clinic with congenital heart disease, and most are followed throughout their lifetime, so they get to know and treasure these families over time.

The NIH Twitter handle, @NIH, will be running a Twitter campaign using #NIHImpact to promote these stories in the coming weeks.

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