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About Us

The Guthy-Jackson Charitable Foundation

The Guthy-Jackson Charitable Foundation was established in 2008 when our beautiful teenage daughter was first diagnosed with Neuromyelitis Optica (NMO), a life-threatening autoimmune disease. At a time when so little was known about this rare “orphan” disorder, and when there were no existing foundations or advocacy groups focused on solving NMO, we dedicated ourselves to funding basic and clinical research desperately needed to better understand, treat and ultimately cure this devastating disease.

From the start, we saw the need to venture beyond traditional science models: by connecting experts from around the world and across multiple disciplines; by incentivizing the sharing of research vital for life-saving discoveries in the laboratory; and by creating a global community of patients, caregivers, and physicians. We have forged alliances between public and private institutions, and with academic, industry and regulatory partners. Our media has continually pushed the envelope to reach around the world and is helping to spur a groundbreaking global movement on behalf of all those impacted by NMO.

Today, with industry-sponsored clinical trials underway and the promise of bold innovative cures on the horizon, we stand at a new threshold. We believe we have the means to solve NMO. In so doing, we will open more windows to solving many other autoimmune diseases. We do this for our daughter – and all the daughters and mothers, sons and fathers, families, friends and advocates who join us in our mission.

– With hope and gratitude,
Victoria Jackson, Bill & Ali Guthy

A Decade & Beyond

August 1, 2018, marked The Guthy-Jackson Charitable Foundation’s 10 Years Anniversary. In just 10 years, Victoria’s visionary approach has achieved milestones and elevated the clinical experience for NMO patients by improving options for treatment, prevention andprogress toward a cure.

Mission Statement

The Guthy-Jackson Charitable Foundation is dedicated to funding research in the quest to understand the pathophysiology and biochemistry of Neuromyelitis Optica (NMO) Spectrum Disorder. Our Foundation is passionate in its support of programs and opportunities aimed at elevating the clinical paradigm for NMO patients and improving options for treatment, prevention, and an eventual cure for this disease.

We are committed to growing our on-line community for all NMO stakeholders, and to serving as a hub of leading-edge information resources as well as a gateway for all who seek to learn more. In our global outreach, we will continue to steward even more effective connections among academia, healthcare, industry and regulatory partnerships. By reducing barriers to cooperation, our mission is to bring breakthroughs from bench to bedside.

Fully aware that every moment makes a difference in the lives of those diagnosed with NMO, we are patient-centered and science-driven. With such innovations as our own bio-specimen collection network and repository, we dedicate ourselves to widening our outreach by continuing to grow the number of sites where patients can donate blood and clinical data vital for research. On a worldwide basis, we will continue to identify proof-of-concept clinical studies that lead to industry-sponsored clinical trials for promising NMO drugs. Our Foundation does not endorse, sponsor, or conduct these trials. Nor do we opt to participate in any monetary benefit from patents arising out of research we have funded; our grantees—individuals and institutions—retain full ownership of their intellectual property.

We recognize that our findings may serve as a model for helping address the global epidemic of autoimmune diseases and are resolute in developing improved communication tools that share our story of hope and urgency. And as we position ourselves at the nexus of brave new breakthroughs in medicine, genetics, and bio-technology, we remain steadfast in our own investment of heartfelt resources now in excess of $55 million. We likewise welcome the interest and support of new and allied stakeholders. The Guthy-Jackson Charitable Foundation devotes 100 percent of all funding gifts to basic research centers.

Founders

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Bill Guthy and Victoria Jackson have each achieved extraordinary success as self-made entrepreneurs. Bill may be best known as a founding principal partner of direct marketing giant Guthy-Renker—the infomercial/media pioneer—while Victoria, a Hollywood makeup artist turned businesswoman, revolutionized the beauty world as the founding CEO of the iconic brand, Victoria Jackson Cosmetics. Longtime philanthropists on behalf of many worthy causes, the couple shifted their focus closer to home in 2008 when their beautiful teenage daughter Ali was diagnosed with neuromyelitis optica (NMO)—a life-threatening autoimmune disease. Upon learning that even the top medical authorities knew little about NMO, Bill and Victoria moved at record speed to establish the Guthy-Jackson Charitable Foundation.

By drawing from their respective areas of expertise as entrepreneurs—with Victoria leading the charge, becoming a mom on a mission, and “trading in mascara for medicine”—they soon defied the often slow-moving pace of medical breakthroughs. Through vision and marketing savvy, GJCF’s founders developed innovative communication tools to galvanize a community into being that didn’t exist before. Their efforts effectively connected the world’s preeminent experts from multiple fields in an unprecedented paradigm of collaboration. Based on best business practices, the Foundation’s policies ensure that all funded projects remain on the critical path to solving NMO. Their team’s efficient approach to scientific and clinical discovery has pioneered a new scientific research model – one that has laid the groundwork for such innovations as:

  • NMO Bio-Repository and collection network for biospecimens and clinical data;
  • NMO International Clinical Consortium accelerating breakthrough advances for NMO patients;
  • GJCF Industry Council synergizing clinical advances to create more effective, safe and timely treatments for NMO patients while facilitating clinical trials;
  • NMO Roundtable Conferences & Patient Days engaging dialogues between scientists, clinicians, patients and members of the NMO community;
  • NMOtion online tool establishing the first registry for NMO patients for industry-sponsored clinical trials;
  • NMO Resource Guide informing patients, families and caregivers of education and awareness.

In the Foundation’s short history, under the leadership of Victoria Jackson and Bill Guthy, there has been a sea change on behalf of NMO patients everywhere—including their daughter Ali, a recent college graduate and young entrepreneur in her own right, and who, alongside her parents, has become a vocal advocate on behalf of all working for better therapies, better lives, and a cure for NMO.

Victoria Jackson

Mother, wife, philanthropist, author, Hollywood make-up artist turned cosmetics entrepreneur, infomercial/media pioneer, and founder of the Guthy-Jackson Charitable Foundation (GJCF). These are only a few titles that apply to the incomparable, inspirational Victoria Jackson.

Bill Guthy

Bill Guthy, self-made entrepreneur and passionate philanthropist, is the founding principal of direct marketing giant Guthy-Renker – the infomercial/e-commerce pioneer that generates more than $1.5 billion in annual sales.

Ali Guthy

An activist, advocate, and author, Ali has addressed a range of subject matter that reflects her passion for public service and her focus on the principle of beneficence—a lifelong commitment to positively impact the lives of others.

Our Team

Jacinta M. Behne, M.A.

Executive Director, The Guthy-Jackson Charitable Foundation
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In 12+ years with The Guthy-Jackson Charitable Foundation (GJCF), Mrs. Behne has built a team-driven infrastructure dedicated to curing Neuromyelitis Optica (NMO), by: a) funding critical path research, b) connecting global communities of researchers, industries, and patients, and c) launching laser-focused programs. Her specific expertise is in leadership and program development, budget planning and management. She worked with three launch teams at NASA centers for over a decade, including researchers, engineers, and public information officers. There she refined processes and protocols for reaching out to stakeholders through the World Wide Web, national conferences, print materials, and media applications. Prior to joining the foundation, Mrs. Behne serves as senior director of a research and education program at Scripps Research Institute. Mrs. Behne is a member of the American Academy of Neurology (AAN), and the National Organization for Rare Disorders (NORD). She has co-authored publications on NMO study outcomes as well as the importance of building and delivering effective education and public outreach programs. She received her Bachelor of Arts with licensing in Secondary Education at Washburn University, Topeka, KS; licensing in Gifted Education at Kansas State University, Manhattan, KS; and Master of Arts in Communication at Colorado State University, Fort Collins, CO.

Daniel W. Behne MARCH

Director of Operations
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Dan is one of the few who has been involved in every facet of the foundation since its inception in 2008. As a result, Dan continues to have unrelenting love and affection to its cause. Currently, Dan provides operations oversight, grant writing and project management to plan, organize and manage resources from conception to completion.

Brian Coords, M.A.

Senior Manager – New Media
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After a diverse background in media, design, writing, and education, Brian began working with the foundation in 2015. In his role as the New Media Manager, Brian provides leadership and project management for media projects including the foundation’s website, smartphone app, conference events, and other various print and digital materials.

Megan Kenneally Behne

Manager – Research Relations & Contracts
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Megan has been with the foundation since 2009. Her administrative background with the foundation and beyond has led to her current role as Research Relations and Contracts Manager. In this role, Megan provides management for the International Clinical Consortium (ICC), the research contract portfolio and foundation hosted events as well as handles communications with the entire NMO research community.

Lisa McDaniel

Advocacy Coordinator
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Lisa has been with the foundation since 2013. Her extensive experience with NMO as a caregiver and her interaction with the NMO patient community has led to her current role of Advocacy Coordinator. Lisa provides leadership in various NMO support groups and patient projects. She handles communication with the NMO community and represents the foundation in raising awareness through educational events with patients as well clinicians.

Reneé Rodriguez

Senior Project Coordinator
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Reneé joined the foundation in 2013. She brings a wealth of experience from previous positions as a Conference Manager at a mid-sized law firm and owner of small couture business. As Senior Project Coordinator, Reneé is a coordinator extraordinaire providing calendar management, conference logistics, administrative support, and the fineness to keep the gears of the foundation moving forward.

Maoloude Toure

Global Ambassador
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Born and raised in Senegal, West Africa, Maoloude Fall Touré is a former professional rugby player and swimmer, proud veteran of the United States Army Prior to immigrating to the United States, Mr. Touré studied sociology, philosophy at the University of Dakar and Computer science at Santa Monica College. He speaks five languages, being professionally fluent in English and French. An active health advocate and blood donor since the age of 17, Mr. Touré uses his skills as an orator to inspire others while leading by example.

As Global Ambassador, Maoloude Toure represents the Guthy-Jackson Charitable Foundation in its work to spread awareness and increase international cooperation towards a cure for NMO. He travels the world as formal representative of the foundation to speak with patients and clinicians alike. Over the past two years, he has engaged with the President of Mali and the Ministers of Health in Bamako, Mali, high-level Catholic priests in Rome, Italy, and leading scientists in Berlin, Germany, and Moscow, Russia. Mr. Touré is determined to do his part in finding a cure for NMO.