mail2

NMOtion Blog

Discussing NMO Research and Advocacy

Sept. 16, 2017 – Seneca Falls, NY – Victoria Jackson, Co-Founder of The Guthy-Jackson Charitable Foundation, was inducted into the National Women’s Hall of Fame in recognition of her distinguished achievements as an entrepreneur, innovator, author, philanthropist and mother.

The National Women’s Hall of Fame was created in 1969, at the birthplace of the American Women’s Rights Movement. The Hall is the nation’s oldest membership organization dedicated to recognizing and celebrating the achievements of great American women. The Induction Ceremony takes place every two years to recognize American women whose lives and groundbreaking work add chapter upon chapter across the centuries of women making history.

“We are pleased to add 10 American women to the ranks of inductees whose leadership and achievements have changed the course of American history,” said Dr. Betty M. Bayer, the Hall’s Co-President and professor of Women’s Studies at Hobart and William Smith Colleges.

“Ten years ago, my daughter was given four years to live.”
Victoria Jackson, Co-Founder, The Guthy-Jackson Charitable Foundation

Video clip of presenter and HOF Member, Gloria Steinem, and National Women’s Hall of Fame Inductee, Victoria Jackson, during the Induction Ceremony.

A decade ago, Victoria’s only daughter, Ali Guthy, then a teenager in high school, was diagnosed with neuromyelitis optica (NMO), a devastating rare autoimmune disease that causes blindness and/or paralysis.

NMO is most commonly first diagnosed as multiple sclerosis (MS) since it shares symptoms with MS. Yet, they are two distinct diseases and some MS medications have been reported to exacerbate NMO symptoms, which makes diagnosis NMO as early as possible critical for best outcomes.

“Ten years ago,” said Victoria during her acceptance speech, “my daughter was given four years to live.”

With no cure and no FDA-approved NMO treatment, Victoria set out to save her daughter.  She and her family created The Guthy-Jackson Charitable Foundation, a nonprofit dedicated to funding research in the quest to understand the pathophysiology and biochemistry of NMO to elevate the clinical paradigm for patients, improving options for treatment, and prevention, and an eventual cure for this disease. The family foundation has invested over $50 million in research, connected over 20 countries and has catalyzed breakthroughs in NMO that could help cure MS and many other autoimmune diseases.

Among the foundation’s breakthroughs was helping to facilitate multiple NMO clinical trials, a daunting task for a rare orphan disease that affects only an estimated 15,000 people in the U.S, and hundreds of thousands worldwide.

But Victoria is no stranger to overpowering the odds, she’s been doing it all her life.

She “was assaulted sexually,” said Gloria Steinem at the Hall’s Induction Ceremony, “by one of California’s most brutal serial rapists.” An inductee to the Hall in 1993, Steinem presented Victoria’s 2017 Hall of Fame medallion.

“[Victoria] lost the ability to graduate from high school,” Steinem said, addressing a crowd of over 700 attendees, the largest induction ceremony audience in the Hall’s history. “She became a standalone entrepreneur, developing makeup for Hollywood actresses that would become, miraculously, the first brand that ever sold on television, and after long and hard work, a huge financial success.”

“I’m not losing my daughter on my watch.”

Victoria Jackson, Co-Founder, The Guthy-Jackson Charitable Foundation

In fact, she 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.

Yet, when Ali’s diagnosis was confirmed, she found herself being forced to repurpose her business savvy into novel approaches to cure the incurable.

“All of the sudden,” Victoria said to the crowd, “I had to close that book on mascara and open the book on medicine. I told myself that I can figure this out. I’m not losing my daughter on my watch.”

In a state of constant “survival mode,” Victoria would stay up into the late hours of the night learning about clinical research, committed to educating herself about science and medicine to levels only actual doctors and scientists understand. For years she scoured complex clinical research publications, alternative therapy options, nutrition and health journals, anything that might lead to a medical breakthrough. Her relentless pursuit is paying off as the foundation has ignited a boom in NMO research that the field has never before experienced since the disease was discovered in 1894.

In addition to funding NMO research over the past decade, the foundation’s work includes creating the largest NMO natural history study in the world (called CIRCLES), hosting annual International NMO Roundtable Conferences and Patient Days, pioneering a new level of research transparency and collaboration that prioritized results vs. publication rights, forming NMO research networks, and spearheading education and advocacy.

“Today is about taking a moment and stopping,” said Victoria. “I believe in people. People want to do the right thing and if you just bring that back to people all over this world to think about how we look at disease, how we look at cure, how we look at humanity, how when we all stand together, shoulder-to-shoulder, we can really make a difference.”

She thanked those with whom she has worked, and also her family who was in attendance, Ali, her husband Bill Guthy and her youngest son Jackson Guthy.

She also had inspiring words for the young women sitting in the audience and watching online.

“And for every young woman out there,” she said, “listen to your voice. Be resilient. Persevere. You can do anything you want.”

Victoria Jackson joined nine other distinguished 2017 inductees:

  • The Honorable Matilda Raffa Cuomo
  • Dr. Temple Grandin
  • Lorraine Hansberry
  • Sherry Lansing
  • Clare Boothe Luce
  • Aimée Mullins
  • Carol A. Mutter
  • Dr. Janet D. Rowley
  • Alice Waters

Past inductees include:

  • Abigal Adams
  • Madeleine Albright
  • Maya Angelou
  • Susan B. Anthony
  • Clara Barton
  • Janet Reno
  • Sally Ride
  • Gloria Steinman
  • Harriet Tubman
  • Oprah Winfrey
  • More…

Induction Ceremony Photo Gallery

Full-length video of the National Women’s Hall of Fame induction ceremony

Join the Discussion

Niamhsnmo says:

We couldn’t of asked for anyone better to run this organisation. I am extremely grateful for all that you do.

Leave a Comment

  • Learn About
    Clinical Trials

    Learn how clinical trials work, whether or not you're eligible to participate, and the possible risks and benefits.

  • Advocate

    A disease is not rare if it affects you, so get the resources you need to join the community and get NMotion to solve NMO!

  • Give Blood

    If you know someone who has been diagnosed with NMO, please help us with blood samples and/or clinical data donations to our Biorepository.

NMO News.

Subscribe to get the latest in news about neuromyelitis optica, from advocacy events to research.

No Thanks