Jackson Victoria - The power of rare: a blueprint for a medical revolution

PRAISE FOR THE POWER OF RARE

I dont read books, Im way too busy for that, but if I did Id 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 its 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

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 mothers push to transform the world of biomedical research. Victoria Jacksons book is a reminder that power lives all around us, often in the most unlikely places.

Maria Shriver

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

Victoria Jackson has been an endless source of inspiration to me. Through the power of a mothers love she has transformed the competitive world of medical research. Im so glad she has shared her blueprint in The Power of Rare so more people can benefit from her tireless efforts.

Reese Witherspoon

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 diseasesrare and common alike.

Ibrahim Boubacar Keta, President of the Republic of Mali

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

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

In The Power of Rare an important book that paves the way to the future of personalized medicineVictoria Jackson has given us a practical, user friendly blueprint for healing ourselves and our world.

Dustin Hoffman

In the last decade, neuromyelitis optica has evolved from being unknown to being a Rosetta stone in the understanding of autoimmune disease. In The Power of Rare, Victoria Jackson tells how she catalyzed this transformation by forging a community of medical and scientific allies to change thinking and solve problems. The Guthy-Jackson Charitable Foundation has connected individual, institutional and national agendas to forge good will and collaboration to help patients. Through optimism, intellect, commitment and vision, she and her team have sped effective treatments and created a pathway to eventual cures.

Brian Weinshenker, MD, FRCP(C), Professor of Neurology, Mayo Clinic

The approach taken to conquer this disease is a blueprint for how we might conquer other diseases, both those that are widespread and those that are rare. The strength of the approach described in the book is cooperation and sharing of ideas, data, and new ways of understanding the disease itself.

Lawrence Steinman, MD, Zimmerman Professor of Pediatrics, Neurology and Neurological Sciences, Stanford University

Victoria has done an exceptional job at creating innovation to help her daughter and patients around the world. There are a lot of lessons we can take from her journey. Shes a tremendous person and this is a great book.

Jesse Dylan, Founder, CEO and Creative Director, Wondros

The Power of Rare is an important story of how dedication and passion for the love of a child coupled with the drive, ingenuity and generosity of a rare individual, namely Victoria Jackson, can change the medical paradigm to break down silos and enhance collaboration in a race toward a cure. Its a great read and a story that needs to be told to inspire others.

Robin L. Smith, MD, MBA, Chairman and President of The Stem for Life Foundation

Victoria Jackson is an innovative entrepreneur, and an iconoclast. The Power of Rare tells the against-all-odds story of how this remarkable leader used her passion and raw determination to revolutionize medical research. The profound effects of her accomplishments will inspire all who strive to make a difference in the world.

Greg Renker, Founding Principal and Co-Chairman, Guthy|Renker

As you read The Power of Rare , youll be moved to the depths of gratitude by how Victoria Jackson has demonstrated for all of us the incredible resourcefulness for doing whatever life calls you to do. She has given us all a profound gift of knowing that the impossible is absolutely possible.

Agapi Stassinopoulos, Author of Wake Up To The Joy of You

Nine years ago, almost nothing was known about NMO, a rare disease we now understand afflicts tens of thousands across the African continent. Thanks to the life-saving work led by Victoria Jackson to cure NMO, there is great hope for improving and saving livesand for solving other diseases that are not so rare.

Professor Samba Sow, Minister of Health and Public Hygiene, Mali

The Power of Rare is a gift for patients, caregivers, clinicians, and scientists alike who seek answers and solutions to the growing epidemic of rare, autoimmune, and other diseases that impact the entire world. Ms. Jacksons call to action for a revolution in caring about rare and each other is a message whose time has come.

Professor Mansour Ndiaye, Prsident African Academy of Neurology: AFAN

villabella press

Copyright 2017 Victoria Jackson

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. For information address villabella press Subsidiary Rights Department, 65 Bleecker Street, New York, NY 10012.

The information provided in this book is designed to provide helpful information on the subjects discussed. References are provided for information purposes only and do not constitute endorsement of any websites or other sources. Readers should be aware that the websites listed in this book may change.

First villabella press edition, September 2017

Library of Congress Control Number: 2017950994

ISBN 978-0-692-92899-8

eISBN 978-0-692-93788-4

Interior design by Nancy Singer

Jacket design by Richard Ljoenes

To my beautiful daughter Ali

In the midst of winter, I found there was within me an invincible summer.

Albert Camus

The value of rare is something I appreciate, something I know intuitively in my life. And the recognition that each of us is infinitely uniquetruly rareis one of those simple, enduring truths that has long spoken to me.

Growing up, I remember secretly thinking of myself as someone who was too different, who didnt quite fit in. An outsider. But over the years Ive come to embrace and feel empowered by my rare identity. Ive also always been most attracted to those who dare to be rarewho think differently, who dont follow form or fashion but who celebrate the very qualities that set them apart.