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The Power of Rare




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Victoria Jackson’s new book, THE POWER OF RARE: A Blueprint for a Medical Revolution, shares how a revolutionary model was created to speed discoveries that help empower patients and save lives. Through her business savvy, wit and heart, she offers real-world advice and inspiration for others to tap into “rare” to empower their own breakthroughs. This inspiring true story tells how one woman’s refusal to accept her daughter’s diagnosis of the rare disease neuromyelitis optica (NMO) led to harnessing the “Power of Rare” and the creation of a blueprint for a global cure movement to solve 21st-century diseases—a user’s manual of lessons that anyone can put to work.

 

Victoria Jackson revolutionized the beauty industry in the 1980s and ’90s with her “no make-up” approach to make-up and ultimately made Victoria Jackson Cosmetics into a billion-dollar global brand. But her greatest test of the power of rare didn’t come until her daughter, Ali, was diagnosed with neuromyelitis optica, or NMO—a rare, life-threatening autoimmune disease—and Victoria, driven by a mother’s love, set out to find a cure for her daughter.

Within days of hearing Ali’s diagnosis in 2008, Victoria began the Guthy-Jackson Charitable Foundation to fund medical research into this often misdiagnosed orphan disease. Her “blueprint” called for breaking down the so-called silos of traditional medical research and bringing together some of the greatest minds to collaborate and share their findings. She hadn’t expected to galvanize how medical research works, but within only a few years, that’s just what she did. By focusing on the “rare” in each of us, the foundation has catalyzed breakthroughs in NMO in record time. These advances are also opening new doors to solving MS, lupus, and other autoimmune diseases—plus diseases that are not so rare, including cancer, infection, aging, and more.

It has been Victoria’s guiding philosophy that if she can do it, anyone can. With The Power of Rare, she shares how the foundation harnessed the power of rare to speed discoveries that help patients. Through her business savvy, wit, and heart, she offers real-world advice and inspiration for others to tap into “rare” to empower their own breakthroughs.

Editorial Reviews

“I don’t read books, I’m way too busy for that, but if I did I’d read this one. Victoria Jackson is one of my closest friends and one smart strong woman. Even when she texts me I read it over and over again because it’s so well written. So I feel I can say with 100% confidence if you read this book you will learn something and see why I love and admire her so much.” — Ellen DeGeneres

The Power of Rare is equal parts science and inspiration. In her urgent drive to help her daughter, Victoria Jackson not only transformed the competitive world of biomedical research, but also created a new medical model for generations to come.” Arianna Huffington

“I have watched for a decade as Victoria Jackson has been funding and creating circles instead of hierarchies and has brought a new and unprecedented collaboration between NMO researchers, drug companies not prone to collaboration, and otherwise isolated patients.”  Gloria Steinem

“This is an important story about a mother’s push to transform the world of biomedical research. Victoria Jackson’s book is a reminder that power lives all around us, often in the most unlikely places.” — Maria Shriver

“This book has everything: an uplifting, unforgettable story that sheds light on the widespread reality of ‘orphan diseases’, the transformational power of activist patients and parents, an empowerment manifesto that will change how you think and feel about what it means to be rare.” — Sherry Lansing, CEO, The Sherry Lansing Foundation

“Victoria Jackson has been an endless source of inspiration to me. Through the power of a mother’s love she has transformed the competitive world of medical research. I’m so glad she has shared her blueprint in THE POWER OF RARE so more people can benefit from her tireless efforts.” — Reese Witherspoon

“I once said that it takes either desperation or inspiration to transform vision into reality. THE POWER OF RARE is the gripping story of how Victoria Jackson drew from the desperation to save her daughter from a life-threatening illness and used inspiration to create a revolutionary blueprint for curing rare and common diseases alike.” — Tony Robbins, New York Times bestselling author, internationally-acclaimed speaker, and peak performance expert

“THE POWER OF RARE is as much a book about rare leadership as it is a true story of how one mother, with no background in health or medicine, has built a global movement to cure a life-threatening rare disease that impacts every nation of this earth.  Her blueprint should be studied by all leaders as we come together to solve all diseases—rare and common alike.” — Ibrahim Boubacar KeÏta, President of the Republic of Mali 

“In THE POWER OF RARE—an important book that paves the way to the future of personalized medicine—Victoria Jackson has given us a practical, user friendly blueprint for healing ourselves and our world.” — Dustin Hoffman

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