Name: Victoria Jackson
Title: Founder and CEO
Organization: Guthy-Jackson Charitable Foundation
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Disease focus: Neuromyelitis Optica Spectrum Disorder (NMOSD) occurs when the immune system mistakes normal tissues of the central nervous system as being foreign. As a result, the immune system attacks these tissues, making proteins (called antibodies) and recruiting immune system cells that can harm otherwise healthy parts of the central nervous system.
Headquarters: Beverly Hills, California
How did you become involved in rare disease: I became involved in a rare disease when my daughter was diagnosed with NMO and given four years to live. She was 14 years old. That was a game-changer. As I say, I went from mascara to medicine because I was in the beauty business at the time. I said, “Okay, nobody’s dying on my watch. I’m not going to lose my daughter. I’m going to learn everything about this condition. I’m going to save her life and a lot of other people as well.”
Previous career: Founder and CEO of Victoria Jackson Cosmetics until 2008
Education: I’m a high school dropout. It turns out that the school of hard knocks and being a survivor was the best training ground I could have ever had.
Organization’s mission: Our mission is to cure NMO. It has always been to cure. And in doing that, we have created a blueprint. I’ve written two books – the latest one is The Power of Rare: A Blueprint for a Medical Revolution. The first one was written with my daughter. We wrote separately, but our pages were put together to create a very powerful read called Saving Each Other: A Mother-Daughter Love Story. The mission is to cure this disease and at the same time show how people can work together and that when they do work together, what can be done. It is a foundation that is self-funded and one that is directed by me. Under our terms of engagement, anyone who is funded has to work together. They have to collaborate. Data is shared. I’ve created my own bio repository. When Ali was diagnosed, you would Google NMO, and there were about three sentences, and it was all fatal. Since then over 900 studies have been published. It has been rather extraordinary over the course of the last 11 years. Two months ago, we had the first drug approved by the FDA and two more in the pipeline.
Organization’s strategy: If it’s not highly translational, if it’s not on the critical path where we could say this information or project is going to lead to the next step towards a cure, we don’t fund it. We’ve been very strategic. We don’t fund one area. We have a model that’s very holistic in all the different areas we pursue. We have a roadmap to get us where we want to go. It’s all about collaboration, sharing, and building a community together. For the last 11 years, I’ve held an annual conference where I bring together all the scientists and researchers from 32 countries, whom I fund, together. And then on the last day, I bring in around 300 patients and caregivers. I also host global meetings, which include three in Africa—one in Morocco, one on the Ivory Coast and one in Mali. I have hosted scientific conferences in London, Paris, Berlin, Moscow, and Stockholm, as well as Boston and Philadelphia. Everybody is talking to each other around the world. I’m creating a movement of bringing people together around a condition that impacts approximately 500,000 people globally.
Funding strategy: It is self-funded. We’ve put $70 million of our own money into the foundation. It’s been very strategic to make sure that every dollar counts. If we do get any donations, 100 percent goes to science.
What’s changing at your organization in the next year Everything changes as we evolve. We are continually looking at that pie chart and asking, “Where does that focus need to be now?” With alignment we turn to the patient community and pharmaceutical companies, ensuring that everyone continues to talk with one another. It’s always very strategic. It’s always looking at where we are; where we should be and what we need to do to get there.
Management philosophy: Be fearless. I’m very myopic in my approach, which is singularly focused. I am going to find a cure for this disease and do whatever it takes to do that. When something’s life-and-death, you run it very differently. You run it like every day is your last. You make the tough decisions. You’re not afraid to ask stupid questions. I always say that it was with the power of love and intention; anything is possible. I’ve seen that and experienced it. I realized at some point early on that it wasn’t just about my daughter, that it was about everybody who has this condition, and shining a light on autoimmune disease and how you could go about thinking about a cure.
Guiding principles for running an effective organization: You have to be committed and passionate. You have to be smart and thinking about where is your true north? For me it always stayed the same. Find a cure for Ali. Everything has just come out of that. Being true to your mission yet being flexible in that. Go where you need to go. Every year we look to see where we have to change, or where our focus has to be. You can’t be static. You have to get people to collaborate and share together. A big point is finding the humanity in people who might not have thought about the sharing, bringing them together, and reminding them of that shared view so that they do collaborate and work together.
Best way to keep your organization relevant: In the rare disease space, everything is relevant when people are still sick and dying. We are the largest research foundation for this disease, and we are doing the heavy lifting. The relevancy is always going to be there one way or another. We are the stewards of the bio-samples. Just seeing where the needs have to be met, that keeps you relevant.
Why people like working with you: I’m straightforward and no-nonsense. I’m clear in the mission. I make decisions easily when they need to be made. I’m not about BS or wasting time. I think people see that I’m a good, strong leader and I’m not looking to profit from this. We don’t own anyone’s intellectual property. We aren’t looking for anything other than a cure. I think it’s hard not to be on board with somebody who is only looking to do things for the greater good.
Mentor: I have not had a mentor. I’d say Gloria Steinem is someone who has been out doing the hard work forever. Life has been my mentor. I look at all the different pieces – whether it’s spiritual, religious, or friendships. I’ve been a seeker my whole life and in all of that seeking, I’ve been like a sponge and have absorbed a lot. Life is my mentor.
On the Job
What inspires you: Looking at my daughter’s face every day and the faces of all of the patients. Everything we do with graphics is about trees and branches and leaves. Everyone will fill out a leaf with their wishes. I always have a bag of those leaves—a big bag now—by my desk, and I’ll pull one out and read it. It’s hard not to be inspired or motivated.
What makes you hopeful: Reading press releases from the FDA that say a drug is coming out. When I was learning about this, I heard about the valley of death and the drugs that never make it across the valley of death. To see an actual press release of a drug coming out and having a pharmaceutical company call and say, “Hey, can you give us your comments?” Or just all the feedback from people telling me how this is impacting their rare disease. That’s rather extraordinary. I had no idea as a high school dropout that this would be somehow something I would be doing at this point in my life and how it’s changing the landscape for many other conditions.
Best organization decision. To involve everybody, not just scientists, but all stakeholders, including patients. Even if they couldn’t afford to be in the room, I paid to have them there. For those who couldn’t attend in person we live streamed the event over the internet. Then everyone is talking to everyone else. That’s been the most effective strategy and part of my blueprint from day one.
Hardest lesson learned: To watch people who are sick and not doing well and not get things as quickly as you want them. That’s the hardest thing.
Toughest organization decision: Deciding to fund one thing and not to fund something else. Sometimes people want to do research just to do research, and that can take you down some dark, lonely, endless roads. Somebody may send a proposal for something that is valid, but it’s not quite where you are going. What you are saying “yes” and “no” to can shape the outcome of some pretty important decisions.
Biggest missed opportunity: I feel like we’ve met all of our opportunities. Maybe they are the ones I don’t know about.
Like best about the job. Patient days, when we bring all the patients together and feel the love and hugs from all of the people in the room.
Like least about the job: Seeing the people who are suffering and not knowing how my daughter is going to be. With a condition like this, you never know when the next attack is coming. You don’t know how it will leave you, so it’s the uncertainty.
Pet peeve: I’m not very patient. I’m not very good with dishonesty or lack of integrity.
First choice for a new career: It puts into perspective what I used to do—what my day job was. I worked in the color world. I made 600 beauty products; it was a lot of color. The world of medicine can be a bit black, white, and gray. I think I miss color. I’d like to work with a little more color.
Most influential book: I don’t know if it was influential, but it helped
me. It was my own self-help book The Untethered Soul: The Journey Beyond
Yourself by Michael Singer
Favorite movie: The Devil Wears Prada
Favorite music: My son Jackson Guthy is an amazing musician, singer, and songwriter.
Favorite food: Anything sweet
Guilty pleasure: Doing nothing. Staring at a rock.
Favorite way to spend free time: With my children and my grandchildren