Rare Leader, Glenna Spencer Steele, Executive Director of Glut1 Deficiency Foundation
February 27, 2020
Name: Glenna Spencer Steele
Title: Executive Director
Organization: Glut1 Deficiency Foundation
Social Media Links:
Disease focus: Glut1 Deficiency (Glucose Transporter Type 1 Deficiency Syndrome). Glut1 Deficiency is caused by mutations in the SLC2A1 gene, which is responsible for producing and regulating the glucose transporter type 1 (Glut1). This transporter moves glucose across the blood-brain barrier to fuel the brain and assist in metabolic functions. Patients with Glut1 Deficiency don’t receive adequate glucose supply for their brains, and a range of neurological symptoms result.
Headquarters: Owingsville, Kentucky
How did you become involved in rare disease:
My daughter, Macie (now 22), was diagnosed with Glut1 Deficiency when she was 10. She had many symptoms for many years before her diagnosis, and even though she was under the care of good doctors in good hospitals, they just had never heard of Glut1 Deficiency, or what they did know was wrong or outdated. Once she was finally properly diagnosed, it was a turning point for us. We had a name for what we were fighting. We had an explanation for her symptoms and a plan of treatment, a place to focus our energy. And, for the first time, we had a community of other families who understood us. We realized that with so little information, funding, and research focused on rare diseases, it would largely be up to families like us to drive progress and make things happen. We also realized that many of us had a long and painful diagnostic odyssey, and we wanted to try to change that for other families who would come after us. I was one of a group of five Glut1 Deficiency parents who formed the Glut1 Deficiency Foundation in 2011, and I served as its first president.
Previous career: Kindergarten and first grade teacher
Education: B.S. and Master’s in Education from Eastern Kentucky University
The Glut1 Deficiency Foundation is a nonprofit family organization dedicated to bringing help and hope to the Glut1 Deficiency community through increased awareness, improved education, advocacy for patients and families, and support and funding for research.
Our original focus and main purpose when we started discussions was to create an official foundation to help facilitate our family conferences we’d been having. Our community gatherings continue to be an important part of our mission. However, we realized early on that there were many unmet needs in a variety of areas, and we tried to think about the things we could focus on and make an impact – awareness, education, advocacy, and research. We have also tried to be strategic from the beginning in our goal of making the Glut1 Deficiency Foundation an inclusive and representative organization where we can be the voice of the entire community. We have grown and evolved over time, but the growth has always been— and hopefully always will be—a result of trying to better meet the needs of our patients and families and making them true partners in the process as we work to fulfill our mission. We have also worked hard to develop good and mutually respectful relationships with the talented and compassionate researchers and clinicians who have devoted themselves to helping our patients, and these partnerships have been critical in helping us be more effective and impactful and have helped them do the same.
Funding strategy: We are a grassroots organization. Most of our funding comes from donations from our affected families or from their circle of friends and family. We have several people in our community who host annual fundraising events and participate in employer matching programs, and we have our own annual Love Some1 with Glut1 campaign, which is an online peer-to-peer fundraising event that runs from Valentine’s Day to Rare Disease Day and provides more than half of our funding each year. We received our first major grant in the fall of 2018—a PCORI grant for patient engagement activities at our most recent conference in 2019. We are grateful to have been selected for the Chan Zuckerberg Initiative (CZI) Rare as One Network, which will provide funding, tools, technology, and training to support capacity building as we work to establish a collaborative research network. We feel this experience and the outcomes from it will help us strengthen our fundraising capabilities in the future in a number of ways, and it will also help us be more strategic in the way we prioritize and allocate funds for research and other programs.
What’s changing at your organization in the next year: As I mentioned, we have been selected to participate in the Rare as One Network, so this will bring some big and exciting changes over the next two years. We will be learning, sharing, and growing with a cohort of 30 rare disease organizations as we all work to create networks of clinicians, researchers, and patients who will work collaboratively to drive progress in our diseases. We will have support from CZI, but we will also be helping each other as we work to tackle common challenges and create roadmaps that will hopefully make it easier for others who follow. We are embracing the opportunity in the coming months to bring our patients, clinicians, and researchers together to clarify what we know, what we need to learn, and the best path to get us where we want and need to be so that we can help bring meaningful and measurable progress for patients toward better treatments and a cure. The work we do during this time will help create the foundation and model for our research approach going forward and will influence the way we go about all of our work in the future.
Management philosophy: I have never felt particularly skilled or experienced at managing people, and I am certain I have a lot to learn in this area, especially when it comes to delegating. I have had a lot of experience, though, in managing little ones in a classroom through my 15 years of teaching kindergarten and first grade. Many of the same principles I valued in that role are ones that I still strive to uphold in what I do now—working hard, sharing kindness, giving and earning respect, being a team player, having high expectations, and fostering a positive, supportive, and accepting climate and culture. A teacher also has to be incredibly flexible and versatile and must also be creative in finding ways to accomplish goals with very limited resources. These are skills that also translate well to the daily work we do in the rare disease world.
Guiding principles for running an effective organization: The most important thing is always to remember your “why” and to stick to your mission. Those serve as the guardrails and the guiding lights to make sure you are keeping focused on the right things and spending precious time and resources in the right way. Someone told us early in the process of setting up the foundation that defining our mission was the most important part, and that has been true. Lots of opportunities come along that are good and honorable, but we have to measure them against our mission to decide if it is something we need to be involved in, especially when we are entrusted with hard-earned money from other people. We owe it to them to spend it well on our mission work. I also think it is important to make a commitment to trying to be as representative and inclusive as possible so all voices are heard, to be transparent, and earn trust, and to keep learning and be open to new ideas so we can continually do things better.
Best way to keep your organization relevant: Again, I think always keeping in mind your “why” and your mission will help ensure you are working towards the right goals and undertaking meaningful work. Whatever you do choose to undertake, do your best to do it well and with integrity. I also think it is important to focus on building relationships and working with others whenever possible, which helps makes you part of a larger team and helps ensure you can play a role in activities and decisions that affect patients directly. It is critical to stay engaged and involved with larger rare disease organizations and take advantage of opportunities to learn and stay abreast of issues around policy and best practices and to be continually updated on the latest in science and technology. Even though progress seems painfully slow at times, things are moving and changing rapidly. It is important to understand the big picture and help make sure our patients don’t miss out.
Why do people like working with you: Our community is full of warm, caring, funny, supportive, and inspiring people. Those who get the chance to work with our patients and families see that right away. People are drawn to them and instinctively want to help. As a foundation, we work hard to be friendly, to be a good partner, to be respectful of different experiences and ideas, to welcome all, to listen and learn, to think outside the box, and to be a trusted source of hope and help for everyone in the community.
Mentor: I’ve had some great mentors in the teaching field over the years—people who have taken the time to share experiences, methods, ideas, philosophies, and who have shown how important it is to put students first, even if it isn’t always the easy or popular route. These are lessons that have continued to help me in my role now as we strive to make patients the top priority in every decision. I’ve also had some other rare disease organization leaders who have been a tremendous help and inspiration, and of course my fellow Glut1 Deficiency parents who help with and support the work of the foundation. My husband, John, also serves as an important mentor in helping me work through how best to deal with some of the business-related things involved with running an organization and managing people.
On the Job
What inspires you: Our patients and their families inspire me the most. The circumstances of life can be hard at times, and I am amazed at the resilience they show, the willingness to see beyond their own struggles to try to help someone else, and their ability to stay positive and full of hope even on the dark days. I know their lives could be so different, and I know that together we can all play a role in helping make that happen—that is inspiring and motivating. Being part of the larger rare disease community, too, is a constant source of inspiration as I am reminded often that even the most fragile and rare among us can still be strong enough to move mountains.
What makes you hopeful: The fast pace of science makes me incredibly hopeful. Things are happening now that people didn’t even dream about a few years ago. We are seeing tremendous successes in other rare disease communities and this makes me happy for them and hopeful that we can see progress like that, too. It is also very encouraging to see rare diseases getting more attention and more dedicated resources from government agencies and other problem-solvers. I’m also filled with hope when I get the chance to spend time with our dedicated researchers and clinicians who listen to us, help us understand our disease better, and to use what we know to improve the lives of our patients.
Best organization decision: Our best decision was to set up the foundation in the first place, and to do it as a representative group of parents. None of us really knew what we were doing or had any skills or experiences that lent themselves particularly well to nonprofit management, but we saw a need and had a strong motivation to put our hopes for change into action. It was scary, and we could have easily been discouraged, defeated, or distracted by our own busy lives, but I’m thankful we took that giant leap, and I’m thankful we continue to learn and grow.
Hardest lesson learned: As a patient organization, we are motivated by the desire to make life better for our patients and families. We have had to learn the hard way, though, that this isn’t always the primary motivation for everyone who comes in contact with patients or who have an interest in rare diseases. There are sometimes hidden agendas, and I think we have been naïve about that at times. For sure, we need all stakeholders to drive progress, but it is important to understand the perspective and expectations of each, and for us as the patient advocacy organization to always strive to serve and protect the best interests of the patients above all else.
Toughest organization decision: It may seem small, but in the beginning, the hardest thing was deciding what to name our organization. Our disease has about a dozen different ways to refer to it and write it with an assortment of hyphens, capitals, and spaces. Some of the terms are very long. We wanted a name that was descriptive enough to give at least an idea of what it was about, but we also wanted it to be as easy as possible. We did some research with different combinations and internet searches and ultimately settled on what gave the best, most relevant search returns. There is still some variability in what people use for terminology, and that sometimes complicates things. Our toughest ongoing decisions are around awarding research grant funds. All ideas have been good ideas and we only have so much money to give, and it is often hard to know how best to invest it.
Biggest missed opportunity: For me personally, the biggest missed opportunity was not being able to get a diagnosis earlier for my daughter. It is bittersweet to see old photos or home movies and think about how I wish I could go back in time and know then what I know now. That is a strong motivator, though, to work hard to try to change what we can change now and help new families get a diagnosis much earlier. From the job-related side of things, I was disappointed to miss the opportunity to go to the first European Glut1 Deficiency conference back in 2016. I was still teaching then and was unable to be away from my class to make the trip. It was hard thinking about this momentous thing happening and I couldn’t be there. We have good, close relationships with many doctors, patient organizations, and families from Europe, and I wanted to attend, learn all I could, and support their efforts as they took this big step.
Like best about the job: I feel blessed to be able to do what I’m doing. It is the most fulfilling work I’ve ever done. I get to see first-hand what people can accomplish when there is a spirit of camaraderie around shared experiences, needs, and goals. In the big picture of life, and with all the choices we have available to us on how to spend our time and energy, this kind of work is important and meaningful. It feels good to know that I’m using my time well. It is extra special, though, because I am personally invested in the cause because of my own daughter and because I care about this community. I feel like they are all part of my family, and I appreciate having the opportunity to help and stand up for people I care about. I also like the flexibility and the variety of things I get to do, and all the interesting people I’ve met in interesting places and all the things they’ve taught me.
Like least about the job: For each thing we accomplish, there are always at least 10 more things I see that we could be doing. As a list-maker at heart, my “to-do” list is never done. This means I sometimes have to prioritize and leave some things for another time, and even learn to say “no” sometimes, and that can be hard for me to do. The least enjoyable and most challenging tasks of my job for me are marketing and social media—I’d rather spend the time actually doing things than talking about them, but I do realize how important it is for a number of reasons to keep everyone in the loop as much as possible. It is also hard sometimes to not be able to see an immediate and measurable benefit from some of our work, but it is reassuring to know that seeds are getting planted that will hopefully bear good fruit one day.
Pet peeve: When people can’t put themselves in another person’s shoes and show kindness, patience, and empathy when it is needed most. When people work hard at pointing out problems but don’t try to help with finding the solutions. When my slow, rural Internet connection doesn’t work. Passwords, logins, and reCAPTCHA
First choice for a new career: A neuroscientist so I could be in the middle of all the research and understand it better, and maybe even do my own research.
Most influential book: In my earlier years, To Kill A Mockingbird by Harper Lee had a big and lasting influence on me. I’ve reread it several times. It includes so many life lessons about compassion and standing up for people and trying to right wrongs. My dog’s name is Harper (after the author Harper Lee). I also have lots of children’s books that I love, particularly anything by Cynthia Rylant. They often have a simple way of telling profound stories. More recently, Chasing My Cure by David Fajgenbaum has been an inspiring and motivating story that has had a lot of impact on my vision for what’s possible in our patient community and the work we do to try to help make it happen. I have given away about 15 copies of it to some of our researchers and clinicians, hoping that it inspires them as much as it has me.
Favorite movie: The Jason Bourne series, The Secret Life of Walter Mitty, The Peanut Butter Falcon
Favorite music: The Avett Brothers
Favorite food: Thai
Guilty pleasure: Sitting outside in the sunshine and reading a magazine, watching HGTV
Favorite way to spend free time: Camping, boating, or spending time doing anything with my family
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