THE POWER OF RARE by Victoria Jackson


A Blueprint for a Medical Revolution
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A cosmetic company mogul, philanthropist, and recent inductee into the National Women’s Hall of Fame recounts how a rare disease and the fight for a cure galvanized her family.

Jackson (Saving Each Other, 2012) shares her motivating story of heartbreak and healing and her collaborative work and personal determination in the face of adversity. The devoted mother of three describes the “nightmare scenario” that suddenly consumed her entire family: her teenage daughter Ali’s painful onset and diagnosis of a rare autoimmune disorder called neuromyelitis optica. This inflammatory and potentially life-threatening condition attacked Ali’s optic nerve, and doctors began aggressive immunosuppressant treatments. Jackson writes clearly and passionately about the “real-life crash course” she embarked on to ignite her survival instinct and spur self-education on the nature of human autoimmunity. As she’d done in cultivating her cosmetic empire, Jackson “followed the guidance of my own intuition to create change” and spearheaded a charitable foundation grounded in the development of a cure for NMO. Working together with pioneers of immune health, Jackson and her husband, Bill Guthy, began discussing how the ailment could be rethought, scrutinized through research and a global clinical consortium, a curative plan blueprinted, and the disease eradicated. Her stirring chronicle (written with Yeaman, a professor of medicine) deftly describes how she and her integrated group of clinicians, researchers, healers, and philanthropists strategized to make headway in understanding (and, in turn, teaching others through multimedia platforms) new and alternative pathways in the treatment of NMO and to cross-educate medical communities worldwide. This ambitious game plan, of course, was no easy task, even when the research grants were funded and the drive to succeed was evident. In her detailed and engrossing account, Jackson tallies up the numerous hurdles her foundation scaled (and continues to confront today) and ends up pleased to report that headway is being made toward effectively “turning science into medicine.” In each chapter, the author provides useful blue-font life lessons learned from the events in that section. While some idioms may read like heartfelt needlepoint wisdom, to those in the throes of a desperate medical crisis or a seemingly hopeless family emergency, Jackson’s encouraging words should be timeless reminders to stay strong and optimistic in the face of tragedy.

An incredibly inspiring and enterprising story of a mother’s tireless endeavor to cure the ailment plaguing her daughter and others across the globe.

Pub Date: Sept. 26th, 2017
ISBN: 978-0-692-92899-8
Page count: 288pp
Publisher: villabella press
Program: Kirkus Indie
Review Posted Online:
Kirkus Reviews Issue: Jan. 15th, 2018