Rare Leader: Tracy Dixon-Salazar, Executive Director, Lennox Gastaut Syndrome (LGS) Foundation

The Basics
Name: Tracy Dixon-Salazar

Title: Executive director

Organization: Lennox Gastaut Syndrome (LGS) Foundation

Social Media Links:

Disease focus: Lennox-Gastaut Syndrome (LGS) is a severe epilepsy syndrome that develops in very young children. Nobody is born with LGS. It develops over time. LGS is a rare disease (less than 1 person in every 2,000). In LGS, seizures usually begin in the pre-school years. More than one seizure type is always present. Tonic seizures are present in nearly all with LGS at some point. Seizures are nearly always treatment-resistant. Many LGS associated disorders exist including issues with sleep, behavior, movement, feeding, toileting, communication, and many others.

Headquarters: San Diego

How did you become involved in rare disease: I was 23 years old when my daughter Savannah developed seizures out of the blue. When we took her to the doctor, over the next several months, nobody could tell us why she started having seizures out of the blue. Those seizures quickly escalated to her having seizures every day, hundreds a day, and multiple seizure types. By the time she was three years old, she was so severely impacted by this epilepsy, which had come from who knows where, that it had taken over our lives. I just wanted to understand how our child could go from being this totally healthy, typically developing, 2-year-old to having this horrific epilepsy take over their life. She’s 29 years old now. That has been our life since she was 3 years old. Back then, nobody could answer my questions about what causes it. “We don’t know, but thankfully we don’t need to know what causes epilepsy in order to treat it,” they said. Well, that wasn’t true for us. Do seizures damage the brain? “Oh no, seizures don’t damage the brain,” they said. Seizures definitely damage the brain. Having this many seizures cause brain damage. We’d asked them can you die from epilepsy? And they’d say, “No.” And yet here we are resuscitating our daughter. I came into this space just wanting answers. That’s what drove me to college—trying to find answers. I didn’t have my degree at the time when my daughter got sick. I spent 12 years in school, ultimately getting a Ph.D. and falling in love with science. But it started out as just trying to answer these questions of where did this come from? How did this start and how is it causing our lives to be completely derailed?

Previous career: Epilepsy researcher

Education: A.S. in biology from Grossmont College, B.S. in physiology and neuroscience, and Ph.D. in neurobiology and neurosciences from the University of California, San Diego

The Organization
Organization’s mission: Our organization’s mission is to end the devastation and suffering that’s caused by LGS. We do that by advancing research, raising awareness, educating people about what LGS is and how it’s treated, and supporting our families. We make sure that our families know that they’re not alone on this difficult journey.

Organization’s strategy: Our strategy centers around four different pillars. The first pillar is supporting educating and empowering our community. We spend a lot of time providing support and education to our community members. Our second pillar is advancing research. There is a disconnect between the research that our families want to see in LGS and the research that’s being done. We try to bridge this gap by funding research. Our third pillar is awareness and community building. This revolves around our events, like our walks and our community awareness events. These bring the community together to take a stand against this awful disease.  We’re too tired to take a stand, but we do it anyway. And our fourth pillar is building and strengthening the organization. A lot of times when you start an organization, you don’t invest a lot of time in building and strengthening that organization and that can turn around and bite you. We have invested time in making sure that this organization’s going to be around as long as it takes in order to find the cures and to help the families that are suffering.

Funding strategy: Our funding strategy is always about putting families first. Anytime we think about bringing in any type of funding, we always ask ourselves, “How are we supporting families? How does this help families?” It’s not getting money just for the sake of getting money. It’s getting money because we have a patient-driven directive, a family-driven directive in order to make a specific program happen. We have a diverse funding platform. We obviously fundraise. We have a walk. We have an annual international LGS awareness day. We have dinner events. But we also work to get grants. We apply for grants through PCORI, the Chan Zuckerberg Initiative, the NIH, and other organizations like the Milken Foundation. We work with industry partners on specific areas. They often will sponsor our events because our events are important to families, especially our family and professional conference. But we also work with industry partners on some initiatives that are important to us, like a patient registry. Whatever we do, we put our families first and we spend 97 percent of everything that we bring in directly on the programs that we offer under each of our pillars.

What’s changing at your organization in the next year: We are growing rapidly. As much as it breaks my heart to know that there’s so many people living with this horrible and devastating disease, I’m glad that there’s a foundation. When I came into this space, there was no LGS foundation and I didn’t meet another caregiver until about three or four years into the journey. I couldn’t stop putting my hand on her hand because it was like, oh my gosh, somebody else that’s living this horror. We’re growing fast at the Foundation now.  We’re trying to accommodate that growth and make sure that we’re executing on our programs well. We don’t want our programs to suffer because we have too much going on. We’re excited because we’re going to be launching our Learn from Every Patient initiative soon.  Everybody has our data except us – doctors, researchers, industry, health care agencies, the government. We’re working to start our own patient registry and bringing the patient voice in at every phase. We also have another scientific meeting of the minds next year. We’ll be focusing on what is the best care for LGS. When we came into this space, we were talking about how even if you get to the best doctor in the world and you get in early with your very young child who starts seizing and you have unlimited resources, science and medicine are not equipped to help stop the LGS. Last year we had a meeting to drive our scientists to start looking for cures, and now they are off and running. Next year we’ll be focusing on bringing our clinicians together to say, “Okay, what is the best treatment now given what is currently available?” We’re pretty excited about all of this, and we are growing and trying to start the conversations that need to happen to move the needle on finding cures for LGS. We’ve been treating this disease the same way for the last 30 years and it’s time to change that.

Management Style
Management philosophy: My personal management philosophy is that if you want to go fast, go alone. If you want to go far, go together. I would love to go fast. Being fast and being nimble are important, but as your organization grows, you want to start to think about longevity. LGS Foundation has been around since 2008 and we’re going to be here until the cures are found. How do we build this organization and make sure that we have a team in place so that we can go far and we can diversify? I feel like management is about uplifting the people on your team, as well as uplifting the community and volunteers. You always see organizational hierarchies where the executive director or the CEO is at the top, but I view it the other way. I think we’re at the bottom trying to lift up our people and empower them to do their job and empower them to be the next generation of cure finders. One day we’re going to retire as CEOs and the next generation has to keep it going. That’s why my philosophy is about lifting others up. Obviously I can make the tough decisions when they need to be made. I’m not afraid to do that either, but I try to empower my team as much as possible to be successful in the goals that they’ve set for themselves and that the organization has set up for them in any given year.

Guiding principles for running an effective organization: Well, as I said, our first guiding principle is putting our families first. We’re all here for our families. When we’re focusing on something and it’s taking us off on a tangent, we work hard to bring ourselves back to the families that we serve. Our second guiding principle is we’re all in this together. We have a lot to do and it’s going to take a team of us to accomplish all we need to do. You may not always like your team members. There are going to be tough days, but hopefully most days you like everybody. At the end of day, we don’t burn bridges. We work together and we focus again on the families we’re trying to serve. Our third guiding principle is that we are tireless in our efforts. I distinguish tireless from being burnt out. I think we have to be reasonable in what we ask our people, but we are also never going to give up on trying to achieve our mission. We focus on these three guiding principles and keep coming back to them over and over so that we don’t get mission creep and we don’t burn ourselves out.

Best way to keep your organization relevant: Once you’ve set your mission in place, now you need to set goals for yourself. Those goals need to be realistic. One of the biggest pitfalls that we as patient-driven organizations face is that we overextend ourselves because there’s so much work to do. It’s important to focus in on specific areas each year. You can’t do it all in a day so you tackle a little at a time. We have four pillars and in each of those pillars we set goals for each year. Then we integrate ourselves into the community of people who are getting things done in that area. We have conversations with them so that we stay educated, informed, and relevant. If you’re staying up to date on the knowledge, if you’re constantly horizon scanning for what’s in the future, you will be relevant. Advances in the areas you are not focusing on in a given year will come later. But each year you just focus, dig in, find your tribe, and you make yourself present and relevant.

Why people like working with you: I think people like working with me because I truly care, because I am trying to leave the world better than I found it, and because I’m not afraid to roll up my sleeves and get to work. I also try to lift people up and I try to share freely with the other organizations that are looking for guidance. I hope that’s why people like working with me.

Mentor: I had a few mentors at different time points. I think my first mentors were the mothers from Cureepilepsy.org, Barb Kelly, Jeanne Donalty, and Susan Axelrod, amazing moms of kids with epilepsy and incredible advocates, who brought me in to the epilepsy and the rare disease community when I was a graduate student and introduced me around. They taught me science and how to run an advocacy organization. They were amazing and I’m so grateful for them. These days, my mentors are Kari Rosbeck from the TSC Alliance and Mary Anne Meskis from the Dravet Syndrome Foundation. These women at these two exceptional foundations are so giving and are always there to help me as I navigate this new role as executive director. I mean, what do I know? I have a Ph.D. I don’t know all the things involved in executive directing and they’ve just been incredible mentors to me.

On the Job
What inspires you: I’m inspired by the families who are living with this disease. They get up every day, put on pants, and live with this devastating disorder. I lived with severe LGS for 16 years and then, when my daughter was 18, we found a medicine that dropped her seizures by 95 percent. And while our lives are not perfect today—she’s intellectually disabled and she’s not seizure free—it is not that hell that we went through for 16 years. Most of our families are still living in that hell. I’m so inspired by them as they take care of and seek out the best care for their LGS loved one. I’m also inspired by the people who work in this field that have taken up this mantra of leaving it better than we found it . So many of us have been failed by the scientific and medical system in some way, shape, or form. Instead of just complaining, we actually want to make a difference and make it better by getting involved.

What makes you hopeful: The way that science is advancing and helping us to understand rare diseases is the thing that gives me hope. When my daughter started seizing 26 years ago, we didn’t know what LGS was. It’s a rare disease, but it’s also a group of rare diseases as well. LGS is a network disease, meaning the brain regions that talk to each other form incorrectly in our kids. And that abnormal network, the LGS network, wreaks havoc on their development. These kids start seizing very young. They may have a genetic cause of their seizures, or they may have a birth injury or some other acquired cause of their seizures. These frequent, uncontrolled seizures, happening while the young brain is developing, change the way the brain forms. We just didn’t know that back then. Today, because of advances in science and because of dedicated people out there doing research, we know so much more. Not only are we targeting the actual causes of the seizures and trying to prevent the epilepsy in kids with LGS, we’re starting to think about how we can target treatments towards the network dysfunction, which continue to cause seizures and cognitive issues into adulthood. I love thinking about how science is going to allow for new types of intervention and not just another anti-seizure treatment, which typically do not work in our children. We are excited about targeting the network of this disease and targeting the root causes. 

Best organization decision: I would say the best organization decision is focusing on building and strengthening the organization. A lot of organizations, when you first start you have a founder and a small group of people. And then you start to bring on family members and friends as board members. Typically, the organization is led by the founder and all the knowledge exists in that person. That’s awesome until you become too big to sustain that. When I took over as the executive director, it was clear that we were bursting at the seams. We were growing. We had so many programs, but we had no full-time employees. We had a homogenous board. I follow this idea of the nonprofit life cycle—the different stages of growth of an organization. You need to grow in your life cycle and build and strengthen the organization if you want to last for the long term. There’s this whole overhead myth that exists in nonprofits. In real life, nobody would expect you or any company or anyone to make a difference in the world without hiring people, but hiring people and having people on your team or staff is not overhead. That’s people who are dedicated to running the programs—programs that fulfill your mission. That’s all mission-related work. Having that shift in our thinking and still being dedicated to spending 97 percent of our funds on our programs, but also emphasizing that we’re building and growing this organization to survive the long term so that we can actually cure LGS, was a great decision.

Hardest lesson learned: The hardest lesson learned is that in those growth stages for us at the LGS foundation, we didn’t write a lot of stuff down. We didn’t have a lot of structure and the knowledge of how things were run. That information was concentrated in a couple of people. When those people left, we were devastated. The organization had grown and we were getting things done but having all of the knowledge base just in a few people and not written down has been detrimental to our organization in some ways. We try to make sure that we build in redundancy and we now write things down so that if anything, God forbid, ever happens to anyone who’s helping to run the organization, the whole organization doesn’t come to a grinding halt.

Toughest organization decision: We have struggled, and we still struggle now, with COVID 19 requirements, especially as it relates to masking and being vaccinated and coming to events and things like that. We have a lot of children in our community who can’t wear masks because they have sensory issues, or they have breathing issues. In addition, we do have children in our community whose symptoms for their seizures  appeared after a vaccination. From the science side of things, we know vaccines don’t cause neurological disease, but we know that vaccines can unmask a neurological disease that’s already lying there dormant. Deciding if we will require our community to vaccinate has been hard because on the one hand, we’re a scientific organization. We are absolutely following the science. We believe in science. But on the other hand, we don’t want to divide our community. It’s such a divisive topic in our community and also in the world as a whole. We’ve struggled with where to come down on that and ultimately, we do require masks, but we’ve not required vaccinations at our events. And that was a hard decision and continues to be hard for us.

Biggest missed opportunity: I think the biggest missed opportunity for us was in past years, we haven’t focused on the research. I hate to call it a missed opportunity because you can’t focus on everything at one time, but we focused more on building a community of support and our family programs. We have an amazing community of support. We have 8,000 members in our community now. We’re supporting families. We have fabulous support groups. We have educational programs. We have an exceptional family conference. Our families come and they find their tribe there. We haven’t focused on driving the research or pushing the research as much as we could have, or more importantly to me, bringing the patient voice into research. That’s something we’re focusing on now and have been for the last two years.

Like best about the job: I like that the patient voice is being elevated in a way that it never has been before. When I came into this, it was, “Trust me, I’m a doctor. Just do what I say.” That’s the way medicine was practiced and that’s the way drugs and treatments were made. That’s the way the FDA operated and nobody really listened to the patient and what they value. There were uprisings and political theater like with the AIDS movement. There were groups out there, but by and large, the patient voice, especially in the LGS community, was largely ignored. What I love now is that the patient voice is being listened to and sought out. There have been some movements in Congress with various pieces of rare disease legislation to address this. The FDA and now industry listen to what patients have to say. That is the best part about the job.

Like least about the job: What I like least about the job is the amount of work that we as patient family communities have to take on because the system is failing in that area. I’m not entirely sure when it became the patient family’s responsibility to bridge the gaps between science, translational research, clinical trials, and the evidence-based medicine schema that is supposed to be in place in hospitals. We also have to help families navigate the healthcare maze, access services, navigate the school maze. The system is  failing our children with LGS and our families as a whole in so many ways. I don’t blame the people within the system, but the system is just not set up to truly help. Our families become more and more isolated in their homes. We imprison ourselves in our own homes because it’s just easier than trying to go out in the world, and our world becomes smaller and smaller. To me, it’s just the sheer amount of work that we have to do, and the sheer amount of areas that we have to be involved in, that frustrates me. The fact that we need to get heavily involved to improve the system. As patient families, we are already exhausted, are kids are having hundreds of seizures every week, and we’re just trying to keep them alive. Now we are also here having to try to make a difference in the system. That is my least favorite part of the job.

Pet peeve: There’s tons and tons of rare disease organizations now and I love that there are so many. LGS is a group of rare diseases. There are many genes that predispose for LGS, and there are so many gene specific groups. Pick a genomic region that causes seizures and it’s very likely that gene syndrome can evolve into LGS. LGS Foundation can’t focus on all those genes. There are hundreds of them that can predispose to LGS, so I love that there are so many gene focused organizations out there. But sometimes when we’re working in our areas, we cut each other off at the legs because we don’t realize that the efforts that we’re doing are actually hurting another organization or hurting the ecosystem as a whole, the rare disease space as a whole. I don’t ever think this comes out intentionally. I don’t think anybody’s ever intentionally doing this. It just happens because there’s so many of us and we don’t have a way to coordinate ourselves. It is always frustrating to me when I see something like that happen. I’m just like, ugh, we just had this missed opportunity as a whole rare disease community because of this thing that this small group did or this one organization did. That always breaks my heart a little bit.

First choice for a new career: In truth, I’d pick this. Maybe I’m just a glutton for punishment, but I feel like this marries my scientific research with my passion to help those with LGS. It also drives me. I’m always driven in this space and there’s never a boring day. I’m in my dream job even though I deal with a lot of pain and suffering on a daily basis as a result. Crazy, huh?

Personal Taste
Most influential book: When I was younger there was a book that my mom gave me called The Value of Believing in Yourself: The Story of Louis Pasteur by Spencer Johnson and Steve Pileggi. I didn’t have a lot of self-confidence growing up and it was not until Savannah got sick where I found my self-confidence. This was very influential and was my favorite book when I was a kid. Now I would say, The Patient Will See You Now: The Future of Medicine Is in Your Hands by Eric Topol is one of the most influential books that I’ve read recently.

Favorite movie: The Saint with Val Kilmer

Favorite music: I like all genres, but I like something that creates a strong mood or feeling in you, whether that’s happiness, melancholy, sleepiness, or some other strong feeling.

Favorite food: Tacos

Guilty pleasure: Showtunes. I love showtunes. Savannah loves to watch musicals on TV so they’re just always in my head—Annie, The Greatest Showman, Phantom of the Opera—I know all the words and she loves those.

Favorite way to spend free time: Sleeping