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Our Story

Meet the Family

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Victoria Jackson

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Bill Guthy

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Ali Guthy

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Victoria Jackson

Mom, wife, philanthropist, author, Hollywood makeup artist, entrepreneur, infomercial pioneer and founder of The Guthy-Jackson Charitable Foundation are a few of Victoria Jackson's titles. Pioneering a new approach to sales, Victoria became the first to market a cosmetics line on television with eleven international infomercials. With a 10-year run on QVC, Victoria Jackson Cosmetics became an international sales powerhouse, with over 600 beauty products that generated a billion dollars in sales.

As a teen, Victoria's approach to surviving a sexual assault was to harness her personal need to reach out and empower women. Later, she became a passionate advocate and guest lectured on self-esteem, enhancing our natural beauty and embracing change. Over a period of 20 years, Victoria inspired women from all walks of life - in prisons, hospitals and youth support programs.

2008 was life-changing for Victoria with the news that her daughter had four years to live. Neuromyelitis Optica (NMO)-a devastating and rare autoimmune disease-became a new personal mission in Victoria and her daughter's lives. Victoria and her husband, Bill Guthy-of the infomercial giant Guthy-Renker- established The Guthy-Jackson Charitable Foundation to fund life-saving research to help understand, treat and cure NMO. Solving NMO has now become her life's work. Victoria has personally led the work of the Foundation to achieve quantum progress and at record speed.

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Bill Guthy

The self-made entrepreneur and passionate philanthropist is the founding principal of direct marketing giant Guthy-Renker-the infomercial and e-commerce pioneer that generates more than $1.5 billion in annual sales. Since 1988, his company has created infomercials for notable brands such as Proactiv, Principal Secret, WEN hair care and more.

When Bill Guthy's teenage daughter was diagnosed with NMO in 2008, Bill Guthy and his wife Victoria Jackson established the Guthy-Jackson Charitable Foundation to champion basic scientific research to find new treatments and ultimately a cure for NMO. Since the beginning, the Guthy-Jackson Charitable Foundation has put forward a new paradigm by funding and encouraging multi-disciplinary medical collaboration between research institutions, scientists and Pharma.

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Ali Guthy

As an activist, advocate and author, Ali Guthy has committed herself to positively impacting the lives of others. Her NMO diagnosis as a teenager shaped her path as she became the face of this rare disease and the driving force behind the need for medical advancements. With a passion for public service, she has continued to use her gift as a natural leader even beyond The Guthy-Jackson Charitable Foundation.

In June 2015, Ali graduated with honors from the University of California, Santa Barbara (UCSB) with a double major in Psychology and Sociology. While at UCSB, she served as Associated Students President, representing the entire undergraduate student body. At UCSB, Ali also served as the Hunger-Houseless Coordinator for the Community Affairs Board (CAB), organizing weekly volunteer events to serve meals to the local houseless community. Additionally, Ali co-founded and served as President of Swipes for the Houseless, a program that enables students to donate unused meals from their college dining plan to those impacted by hunger.

Why We Started

Our story began in 2008 when our daughter, Ali, told us she had an eyeball headache behind her eyes and blurred vision. Blood test results were shocking—pointing to a little-known autoantibody against a protein called aquaporin-4 (AQP4). Our beautiful Ali was diagnosed with Neuromyelitis Optica (NMO), a life-threatening autoimmune disease that attacks the central nervous system. At only 14 years old, the doctor estimated Ali could become blind and paralyzed or not with us at all within the next four years.

Her out-of-the-blue diagnosis changed everything. At the time, so little was known about this rare "orphan" disorder, and it was difficult to find anyone with the same diagnosis. We spent countless hours scouring the Internet and looking for support, only to be left with few answers.

Accepting the frustration and despair wasn't an option. On August 1, 2008, we founded The Guthy-Jackson Charitable Foundation and immediately started funding research to help solve the mysteries of NMO and pioneer solutions. Instead of relying on traditional science models, we connected experts within and beyond the field of neurology and from around the world to share research and enable life-saving discoveries.

Against All Odds

Taking on a rare disease requires commitment. Since 2008, we have invested more than $70 million and funded 90+ research studies to understand how NMO works and accelerate solutions. As a result, our work has revolutionized the field. We formed an international panel to rewrite the diagnostic criteria for NMO to speed accurate diagnosis and best therapy. We sponsored the CIRCLES study with its dedicated biorepository to understand the NMO patient experience and provide data and biospecimens for groundbreaking discoveries. We have hosted annual RoundTable Conferences for researchers and Patient Days for patients and caregivers-inspiring all stakeholders on our mission. We created the GJCF International Clinical Consortium for NMO, led innovative clinical trial designs and brought the industry together in ways rarely done. After investing time and so much heart into research, three therapies were approved for NMO from 2019-2020. There had been none for over 100 years.

Where We are Now

Today, Ali lives a full life, as do countless other NMO patients who were struggling with frightening relapses and poor quality of life just a few years ago. Incredible discoveries and quantum leaps have been made-yet there is more to do to end NMO. Even so, we stand at a new threshold with the belief that NMO can be solved. Our priorities continue to push beyond what many thought would be impossible.

Mission-critical goals now include predicting and stopping relapses and retraining the immune system to end the disease altogether. With the help of our growing patient community, academic and industry partners, we won't stop until we've found a cure!

With hope & gratitude,

Victoria Jackson, Bill & Ali Guthy

Our Vision

To live in a world in which no one suffers from Neuromyelitis Optica.

Milestone Moments:
The Guthy-Jackson Charitable Foundation

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Onward to Cures

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Fast Facts about NMOSD