mail2

NMOtion Blog

Discussing NMO Research and Advocacy

By Victoria Jackson, Founder
The Guthy-Jackson Charitable Foundation

I’ve always thought of myself as a “goodwill ambassador for makeup” and empowering women through makeup has been one of my missions in life. My personal philosophy has always been, “When you look better, you feel better. And when you feel better, you can change your life.” I often volunteer at women’s correctional facilities, hospitals, and youth support venues, to spread this message and to teach inner confidence through outer beauty. When women embrace self-confidence, they learn the key to success, and liking who they see in the mirror is a powerful first step in that transformative process. I call this program “The Power of Mascara.” Building my cosmetics brand these past twenty years has enabled me to touch millions of women’s lives through the power of makeup. What I didn’t realize during all this time was that my experience in beauty was organically preparing me for the next phase of my life – “The Power of Medicine.”

N.M.O. Most of us look at these as just letters of the alphabet. In the moment the doctor uttered these three letters, my life, and the lives of my family, were instantly changed forever. It all started when my fifteen-year-old daughter’s vision became impaired in her left eye, losing the ability to see color and rapidly getting worse over days to come. We were perplexed and desperately trying to find the cause. Our search brought us to the Mayo Clinic, where my daughter was officially diagnosed with Neuromyelitis Optica (NMO) Spectrum Disease, or NMO. After the initial shock of the diagnosis in June 2008, I immersed myself in researching this disease to understand everything there was to know about it, and how NMO would ultimately impact my daughter and our family.

In addition to literally reading every piece of information and NMO research articles available on the Web, I met with many clinicians to expand my knowledge about the disease. It quickly became evident that not only is NMO considered an “orphan” disease, but that very little research is available. We were fortunate to meet Dr. Katja Van Herle through our research and met with her organization, the All Greater Good Foundation in early July 2008 when it became clear that there is little-to-no funding available to research this rare and often misunderstood disease. We joined hands with the All Greater Good Foundation to immediately begin our work, and thus, The Guthy-Jackson Charitable Foundation was born.

Our goal was to create a platform to give NMO, and related orphan diseases a voice. Our mission became clear: To fund research in the search to understand the pathophysiology and biochemistry of NMO Spectrum Disease. We wanted to support and provide opportunities to develop programs for prevention, clinical treatments, and an eventual cure for NMO. We also were adamant that 100% of all funding gifts are to be given to basic science research centers.

We interviewed the best medical advisors to join our team, and set forth the first medical roundtable of its kind in November 2008. The Guthy-Jackson Foundation hosted a meeting with a group of top medical advisors, researchers, and clinicians from around the world to help find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica (NMO) Spectrum Disease. This group freely shared their research and clinical information in the spirit of finding answers. It was at this meeting that I realized that my personal mission had made the transition from Mascara to Foundation, but not the cosmetic foundation that I am known for and built my success upon. It was a different kind of foundation this time – a medical foundation. The irony of it all was not lost on me. I always used to say to aspiring makeup artists, “It’s not like we are curing cancer,” and now, here I am trying to cure a rare orphan disease.

So, what is NMO, you ask? NMO is an uncommon disease, a syndrome of the central nervous system (CNS) that affects the optic nerves and the spinal cord. NMO is sometimes confused with Multiple Sclerosis. NMO is similar to MS in that it is a variant along the spectrum in the world of autoimmune disease, but it is a completely different disease. Individuals with NMO can go on to develop optic neuritis, which causes pain in the eye and vision loss, and transverse myelitis, which causes weakness, numbness, and sometimes paralysis of the arms and legs, along with sensory disturbances and loss of bladder and bowel control. NMO leads to loss of myelin, which is a fatty substance that surrounds nerve fibers and helps nerve signals move from cell to cell. The syndrome can also damage nerve fibers and leave areas of broken-down tissue. In the disease process of NMO, for reasons that aren’t yet clear, immune system cells and antibodies attack and destroy myelin cells in the optic nerves and the spinal cord.1

I am working closely with my daughter’s primary care physician, a pioneer in NMO research, in managing her clinical care. My daughter is doing well at this point, and I am thankful for that. She continues to thrive at school, and remains active in sports. She is my one and only daughter – a one of a kind, beautiful, smart, spirited and loving girl.

As the Founder of the Guthy-Jackson Charitable Foundation, I am unwavering in my commitment and quest to find a cure for my daughter and all those afflicted with NMO Spectrum Disease

About Victoria Jackson
A recognized trailblazer in the cosmetics and infomercial industries, Jackson has racked up eleven infomercials for her eponymous line Victoria Jackson Cosmetics, which has enjoyed an astounding billion dollars in makeup sales, and continues to grow. Jackson has also reached thousands of women through her books: Redefining Beauty: Discovering Your Individual Beauty, Enhancing Your Self- Esteem (Warner Books, 1993) and Make Up Your Life: Every Woman’s Guide to the Power of Makeup (HarperCollins, 2000), a deeply personal account of her experiences in the business which she calls one of her proudest achievements.

An active philanthropist, Victoria’s newest charity is near and dear to her heart. The Guthy-Jackson Charitable Foundation is dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica (NMO) Spectrum Disease.

Married to husband Bill Guthy of infomercial giant Guthy-Renker, Victoria Jackson is a proud mom of three children and together they make their primary residence in Los Angeles.

1 Excerpts taken from: NINDS Neuromyelitis Optica Information Page. To view the complete article, see: http://www.ninds.nih.gov/disorders/neyromyelitis

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