A Conversation about Cystic Fibrosis with Emily Kramer-Golinkoff of Emily’s Entourage

On Sunday morning, July 26 at 11am on Zoom, join us for a virtual conversation with Emily Kramer-Golinkoff. Emily is Co-Founder of Emily’s Entourage, an innovative 501(c)3 foundation that accelerates research for new treatments and a cure for nonsense mutations of Cystic Fibrosis, a fatal genetic disease primarily affecting the lungs and digestive system. She is also an internationally recognized patient advocate and speaker. Emily has CF. She is also Jewish. To read more about Emily’s Entourage, please click here.

Emily will talk about her experience living with cystic fibrosis and relate it to the story of Mallory Smith. Mallory’s book, Salt in My Soul – An Unfinished Life, was published in March 2019. You do not need to read Salt in My Soul to attend this program.

The book are the diaries of a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five.

Diagnosed with cystic fibrosis at the age of three, Mallory Smith grew up to be a determined, talented young woman who inspired others even as she privately raged against her illness. Despite the daily challenges of endless medical treatments and a deep understanding that she’d never lead a normal life, Mallory was determined to “Live Happy,” a mantra she followed until her death. Mallory worked hard to make the most out of the limited time she had, graduating Phi Beta Kappa from Stanford University, becoming a cystic fibrosis advocate well known in the CF community, and embarking on a career as a professional writer. Along the way, she cultivated countless intimate friendships and ultimately found love.

For more than ten years, Mallory recorded her thoughts and observations about struggles and feelings too personal to share during her life, leaving instructions for her mother to publish her work posthumously. She hoped that her writing would offer insight to those living with, or loving someone with, chronic illness.

What emerges is a powerful and inspiring portrait of a brave young woman and blossoming writer who did not allow herself to be defined by disease. Her words offer comfort and hope to readers, even as she herself was facing death. Salt in My Soul is a beautifully crafted, intimate, and poignant tribute to a short life well lived—and a call for all of us to embrace our own lives as fully as possible.

To sign up for this program, and to receive the Zoom link and password, please contact Justin at Justin@hcrj.org.