Diane Shader Smith
Spokesperson for the bestselling book Salt in My Soul
About Diane Shader Smith
Diane Shader Smith is a writer and cystic fibrosis advocate whose daughter, Mallory Smith, was diagnosed with cystic fibrosis (CF) when she was three years old. From age nine to her death at the age of twenty-five, Mallory kept comprehensive diaries, recounting her chronic illness, her relationships, and her determination to speak out about her experience. Diane Shader Smith now speaks out about CF, especially about the patient experience and the critical role parents play in treating a child with chronic illness. She also educates audiences about a treatment for superbugs called phage therapy, which was named after Mallory because her case inspired its discovery, and which has had positive results among patients who have received the treatment.
Salt in My Soul: An Unfinished Life is a compilation of Mallory Smith’s diary entries, edited by her mother and published posthumously. Despite the daily challenges of endless medical treatments and an understanding that her illness would keep her from leading a normal life, Mallory wrote with a determination and spirit that shine through the pages. In her words, “I am limited in what I can do, but not in what I can say.” Mallory chronicled her many hospital visits and the medical insights she gleaned, along with her relationships with family and friends and her hopes and desires for herself and the world. With this book, Diane Shader Smith provides a brilliant portrait of a brave young woman navigating normal adolescent and young adult experiences, set against the backdrop of a chronic illness. Salt in My Soul was recently optioned for production by the Oscar-nominated directors who were responsible for two groundbreaking documentaries, The Invisible War and The Hunting Ground.
In addition to speaking publicly about cystic fibrosis, Diane Shader Smith advocates strongly for increased research on the disease. She and her husband have been instrumental in bringing a new medical treatment for superbugs to light, called phage therapy. Diane Shader Smith and her husband also started a legacy fund with the CF Foundation called “An Evening in Mallory’s Garden,” which has raised over $5 million for CF research, as well as an invaluable amount of awareness. Smith wrote a children’s book called Mallory’s 65 Roses to explain CF for children, which has sold over 30,000 copies and made Mallory a well-known figure in the cystic fibrosis community.
Navigating through Respiratory Illness
Much of what Mallory writes about her illness parallels our daily reality during the COVID-19 pandemic, from the precautionary health protocols that are now commonplace to the respiratory symptoms that those who are infected are experiencing, as well as the value of resilience and community in offsetting the toll on mental health. As there is currently no cure for either end-stage lung disease or COVID-19 – and with so much anxiety surrounding this pandemic – Mallory’s story sets the stage for timely discussions about chronic illness, public health, the benefits of journaling, mental health, end-of-life choices, bioethics and legacy. Diane Shader Smith is prepared to discuss the important insights her daughter Mallory shares in Salt in My Soul, through virtual talks and future in-person events.
Phage Therapy: How a medical maverick brought a novel treatment for superbugs to the attention of mainstream medicine
Mallory Smith passed away from a superbug at the age of 25, two months after she received a double lung transplant. As she was dying, her father moved mountains to get an experimental treatment called phage therapy for her; a treatment that had been used 100 years ago before penicillin was discovered. Once it was, penicillin’s patent protection and financial incentives rendered work on phage therapy obsolete. The United States Navy responded to Mallory's story and provided the phage therapy cocktail that Mallory received. Tragically, it didn’t arrive in time to save her, but the autopsy revealed that it had started to work – and would have saved her life if she had gotten it earlier. Diane Shader Smith shares this riveting story about mobilizing the medical community and the power each of us has to make a difference. With the insight of an experienced medical insider—and the heart and passion of a grieving mother—Diane walks audiences through this simultaneously exhilarating and heartbreaking story of a father's dogged determination to save his daughter and the novel treatment that is now being used to save others.
The Accidental Expert: How a young woman’s diary is serving as a manifesto about the patient experience for healthcare providers
Mallory Smith was a 6 foot-tall, athletic girl with a beaming smile and infectious energy; all traits which helped propel her through life. Because she looked so healthy, most people didn’t know that Mallory had cystic fibrosis or that she suffered in silence. Diagnosed at the age of three, Mallory grew up knowing she had a chronic illness that would someday kill her. It’s why she wrote in detail about her treatments and hospital stays, the transcendent intimacy she developed with her beloved doctors, the unexpected community she found in hospitals, and the problems imposed by the medical system she depended on. Her ability to create poetry out of prosaic experiences and vivid vocabulary are why so many call Mallory’s memoir, Salt in My Soul, life changing. Diane Shader Smith shares the arc of Mallory’s story and the important insights Mallory lands on in a colorful presentation that’s engaging and educational.
Salt in My Soul - For the Academic Audience
"'Who lives, who dies, who tells your story?'’ That question from the musical Hamilton inspires Diane Shader Smith, a captivating speaker, to share the legacy her daughter leaves with Salt in My Soul: An Unfinished Life by Mallory Smith. A gifted and prolific writer, Mallory died at the age of 25, two months after receiving a double lung transplant. The passionate environmentalist, three sport varsity athlete and champion of universal health care kept a private journal for ten years. Before she died, Mallory asked Diane to publish the parts that might help others. Specifically, her writing about issues so many college students experience: invisible illness, body image, mental health, access to healthcare, the imposter syndrome, wanting to fit in, feeling insecure, grappling with independence, worrying about the future, her longing for love, her rage at callous health insurers and grief. Mallory writes: “I feel like people with CF are privy to secrets it takes most other people a lifetime to understand.” Diane’s inspiring talk about her daughter’s coming of age offers informative insights and enables her to connect with students—and leaves them questioning what their own legacies will be.
Praise for Diane Shader Smith
Praise for Salt in My Soul: An Unfinished Life
This is a deeply moving book full of wisdom about health, life, and love—and about the importance of finding happiness wherever and whenever we can. It broke my heart but also inspired me to make the most of every day.— Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
A beautiful, brave, unsparingly insightful account of a courageous girl who becomes a woman warrior and fights for her life while living it fully.— Eric Lax, author of The Mold in Dr. Florey’s Coat
Brilliant, compassionate, and radically optimistic, Salt in My Soul captures the heartbreaking beauty of being alive. I feel fuller, more educated, and more human having read this book. Mallory Smith may have salt in her soul, but she’s all firecracker. She is a gift and so is her writing—every grain of it.— Beck Dorey-Stein, New York Times bestselling author of From the Corner of the Oval
In Salt in My Soul, Mallory Smith is bracingly candid and unflinching in her portrayal of life with chronic illness. Yet she also writes with warmth and humor about the everyday experiences of growing up as a young woman in search of meaning, purpose, and love while knowing her life will likely be cut short. This is a deeply moving book full of wisdom about health, life, and love—and about the importance of finding happiness wherever and whenever we can. Salt in My Soul broke my heart but also inspired me to make the most of every day.— Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club
Those of us fortunate enough to know the amazing Mallory Smith learned that no matter how sick, she would find escape from the prison of her illness to play water polo, to be prom queen, to go to Stanford, to graduate Phi Beta Kappa, and to know true love in her twenty-five years. With the strength of her parents, the support of her many friends, and her own great grit, Mallory lived her ambitions. Salt in My Soul is a beautiful, brave, unsparingly insightful account of a courageous girl who becomes a woman warrior and fights for her life while living it fully.— Eric Lax, author of The Mold in Dr. Florey’s Coat
With spicy wit and brutal honesty, Salt in My Soul reveals the heartache and courage of a young woman who always knew that her life would be cut short by a chronic disease. Read this memoir and you’ll be astonished by Mallory’s bravery and uplifted by her vivacious spirit.— Randi Hutter Epstein, MD, MPH, writer in residence, Yale Medical School, author of Aroused
Books by Diane Shader Smith
Media About Diane Shader Smith
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Salt in My Soul
"This is a deeply moving book full of wisdom about health, life, and love—and about the importance of finding happiness wherever and whenever we can. It broke my heart but also inspired me to make the most of every day." —Will Schwalbe, New York Times bestselling author of The End of Your Life Book Club