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
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 $40 million. We likewise welcome the interest and support of new and allied stakeholders. The Guthy-Jackson Charitable Foundation devotes 100% of all funding gifts to basic research centers.
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 and TV infomercial star, 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.
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, 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.
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.
Jacinta M. Behne, M.A.
Exectuive Vice President of Administration and Operations of The Guthy-Jackson Charitable Foundation
Mrs. Behne’s career in education and management spans three decades and multiple platforms from university lecturer to education researcher. 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. Her specific expertise is in program development, budget management, and translating complex science content for public venues. Mrs. Behne served as a NASA contractor for many years in the area of education and public outreach. During that period, she worked with three launch teams and collaborated with NASA centers and staff, including researchers, engineers, and public information officers. As such, she refined processes and protocols for reaching out to learning communities and the public through the World Wide Web, national conferences, print materials, and media applications. In her work with The Guthy-Jackson Charitable Foundation (GJCF), Mrs. Behne works to build a team-driven infrastructure dedicated to curing Neuromyelitis Optica (NMO), a misunderstood and often misdiagnosed disease by: a) funding critical path research and b) connecting global communities of researchers, industries, and patients. Mrs. Behne is a member of the American Academy of Neurology (AAN), National Organization for Rare Disorders (NORD), and serves as a solicited reviewer of NASA education products and as a presenter at annual conferences. She has published several articles on the importance of building and delivering effective education and public outreach programs to ensure successful community engagement.
Judy Sheard, M.P.H., M.A., C.C.R.A., C.C.R.C.
Senior Manager – Clinical Studies
Judy’s clinical research experience includes positions at academic research sites, biotech and pharmaceutical companies and a contract research organization. She spent 20 years at Scripps Health, serving as Research Manager for numerous obesity and diabetes studies, and most recently as a Senior Manager at the Scripps Translational Science Institute. There she managed trials in genomics and wireless medicine, with activities including protocol development, site management and staff training. Ms. Sheard holds a Master of Arts degree in psychology and a Master in Public Health degree with an emphasis on Health Promotion. She is certified as a Clinical Research Coordinator (CCRC) and Clinical Research Associate (CCRA) by the Association of Clinical Research Professionals.
Daniel W. Behne, M. Arch
Senior Manager – Operations
Dan has been working with the foundation since it was formed in 2008. His numerous roles during this time started with patient advocacy, office oversight and project management. This has led to his current role as Senior Manager of Operations to include budgeting, accounts payables, online donations, human resources, IT management and annual conference and meeting coordination.
Derek Blackway, B.A.
Senior Manger – Communications & Advocacy
Derek has been working at the foundation since it was established in 2008. He started as part of the team creating the foundation’s website, NMO awareness resources, internal communications, and assisted with event logistics. His roles expanded to managing the foundation’s advocacy network, external communications, developing awareness and educational programs, and fundraising. Now, as Senior Manager of Communications & Advocacy, his roles include managing the foundation’s social media platforms, conference management, community relations and mobilization, and aligning communications strategies.
Manager – Research Relations & Contracts
Megan began working with the foundation in 2009. Her numerous roles during this time have included office and event support, contracts administration, and document management. This has led to her current role as Manager of Research Relations and Contracts. In this role, Megan provides research contract management, communications with the International Clinical Consortium (ICC), and event management and communications.
Renee began working with the Foundation in 2013. During this time she has provided administrative support and project management for the team. Performs as human resources assistant, event coordinator the for regional & international conferences and manages the distribution of advocacy materials.
Brian Coords, M.A.
Manager – New Media
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.