ELSIcon2022 • Networking Session • June 2, 2022
Diane Shader Smith, Emily Kramer-Colinkoff, Will Battersby, Rebecca Mueller
Salt In My Soul, a recently released documentary, chronicles the life of Mallory Smith, a woman with cystic fibrosis, who worked to live fully while dying of a rare superbug and CF. Using Smith’s eloquent words from her diary, and audio and video clips, the film brings Smith’s memoir of the same name to the screen, powerfully conveying the joys and challenges of life with a progressive genetic disease. Conference attendees are encouraged to watch the film in advance of the panel discussion with the film’s director, Will Battersby, Smith’s mother, Diane Shader Smith, a seasoned speaker, writer and publicist, and Emily-Kramer Golinkoff, an internationally recognized patient advocate and speaker, and Co-Founder of the 501(c)3 Emily’s Entourage which accelerates research for new treatments for rare forms of CF. Moderated by ELSI post-doctoral fellow Rebecca Mueller, whose CF research is featured elsewhere at the conference, this panel continues a timely and important conversation about what it means to come of age amidst lifelong illness, how infectious risk has long shaped the lives of people with CF, and why amplifying patient voices improves health outcomes. NOTE: Please watch the documentary before attending this session. Those who add this session to their agenda will receive a code allowing them to watch the documentary before the meeting at no cost.