Female Founders: Alice Bast of Beyond Celiac On The Five Things You Need To Thrive and Succeed as a Woman Founder
Be real. You are not superhuman, but this is all-consuming work. Be honest with yourself and have an honest understanding with your spouse if you are married about what it will take to be successful. It’s not easy to be married to a founder.
As a part of our series about “Why We Need More Women Founders”, I had the pleasure of interviewing Alice Bast.
Alice Bast’s personal experience with celiac disease ignited her passion to help the estimated three million Americans suffering from the disease receive a prompt and accurate diagnosis. Since then she has expanded the mission of her nonprofit Beyond Celiac to not only help people get diagnosed, but also to make it possible to live full and healthy lives after that diagnosis; to live, travel and eat without fear in a world Beyond Celiac.
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”? What led you to this particular career path?
My story begins just prior to 1990, when my husband Will and I started our family. My first pregnancy was uneventful, but my second was the opposite. Early on, severe fatigue set in. I couldn’t get enough sleep because severe diarrhea, joint pain and migraines kept me awake through the nights. Two weeks before the due date, I could sense that something had changed with my baby. Unfortunately our worst fears were realized — I delivered a full-term stillborn daughter, whom we named Emily.
I continued on to have multiple miscarriages before finally delivering my youngest daughter, who weighed only 2 pounds at birth. I was grateful, but my problems didn’t go away. For the next eight years, I visited 22 doctors, none of whom could identify the source of my ailments. At 5’9″, I had wilted to a mere 105 pounds and was convinced that I was dying. I wondered if doctors would ever find the problem with enough time to treat me.
It wasn’t until talking to a family friend, a veterinarian, that I found the source of my pain: my diet. My friend mentioned “celiac disease,” and said that animals can have reactions to wheat. I went ahead and visited my 23rd doctor. He said I was too tall to have celiac disease. I knew there was a blood test, so I insisted. “Here’s my arm,” I remember saying. “Give me the blood test.” Sure enough, the results came back positive. After eight years of struggling, I finally had my answer: celiac disease.
So after learning of my diagnosis of this autoimmune disease, I began the difficult task of eating gluten-free. I joined and later led support groups for people diagnosed with celiac disease. But still… I wondered how many people were out there suffering for years without answers as I had. My illness had remained undetected for years in part because awareness among medical professionals is extremely low. I also did not fit the description of the “typical” person with celiac disease — I wasn’t short, wasn’t a child, and I looked “fine.”
I knew I needed to do more. I enrolled in a graduate program at University of Pennsylvania in nonprofit management. I did a SWOT analysis and gaps analysis to identify the best way to serve the patient community. Since no organizations were working on raising awareness, in 2003 I decided to create the National Foundation for Celiac Awareness, now called Beyond Celiac, with a dual mission: to increase awareness of celiac disease in order to make early diagnosis standard, and to raise funds to support medical research and education.
Can you share the most interesting story that happened to you since you began leading your company?
Maybe one of the most interesting things is that I’ve done some things that people said were impossible. For example, right when we were starting out, I landed an NIH grant to raise awareness about celiac disease. I was the primary investigator on the grant and it’s kind of rare for a layperson to get an NIH grant, but I am very persistent. The need was there, the idea was sound, I was able to recruit the right people who had experience who could help me, and I was so passionate to help other people get an accurate diagnosis that we were successful. Then we were told that there was no point in increasing diagnosis if the treatment — the gluten-free diet — was unavailable. So instead of just accepting that answer, we took on the project of increasing availability and affordability of gluten-free food. I learned that the lack of availability of gluten-free food was actually a barrier to diagnosis and research for additional treatments. So I set out on a quest to build a market when the naysayers said it was impossible. I camped out in Benton Arkansas at the Walmart headquarters to, over time, raise awareness about the need for the availability of affordable gluten-free food. Today, Walmart has shelves and sections labeled “gluten-free.” Additionally, we partnered and worked with Whole Foods, Wegmans, and even Anheuser Busch to bring all kinds of products to market. We helped introduce the first mainstream gluten-free beer!
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
We did a series of events called Appetite for Awareness. We traveled to cities all over the country and held events in which we paired high-end restaurant chefs and top doctors to do cooking demonstrations, talk about celiac disease and the need for safe gluten-free meals when dining out. It was a great campaign! But there was this one event in the Bay area that went a little off-plan. The event was on Treasure Island, a San Francisco neighborhood that is accessible only by one bridge. My team and I had arrived early to set up, and the doctors and chefs were on their way. As the event time approached and the guests had yet to arrive, I started getting a stream of texts — and pictures — from the guests who were en route. Turns out, the commute time happened to coincide with the local edition of the World Naked Bike Ride, and the naked bike route was across the same bridge! Hundreds of naked bike riders occupied most of the lanes of the bridge. Traffic there is always tough, but this caused an exceptional “gaper delay” for sure! Not only were we competing for the roadway, who do you think the press wanted to cover that day? The lesson learned was to be sure to know the landscape and competition, both metaphorically and literally.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?
I’m grateful for support from so many people! One is Ed Snider. I met Ed, then chairman of Comcast Spectacor and the owner of the Philadelphia Flyers Hockey team, in the early 2000’s. He’d had health issues and ultimately I helped him on his journey to a celiac disease diagnosis. As I was founding Beyond Celiac, he believed in me and became a mentor to me. He became a founding board member and committed both personal resources and corporate support. Even when others told him that he had no business getting involved in a little nonprofit startup, he did it anyway. He was the chairman of Comcast Spectacor which owned large sports arenas in Philadelphia. He donated space for fundraisers, paid for the event expenses. It was he believed in my vision that we were able to move so far so fast.
I also want to recognize Nancy Ginter, the Beyond Celiac Director of Administration. We actually met in nonprofit management program at Penn. She had already retired at that time, but soon found she wasn’t very good at being retired. We graduated together and she joined me at Beyond Celiac; she was my very first employee, although when there are only two of you it’s less of a boss-employee relationship and more of a partnership. I will always be grateful for her support and experience in those early days. She’s 80 years old and still with me today — I’m dreading the day she retires for a second time and we have to figure out how to keep our paperwork in order without her!
Ok, thank you for that. Let’s now jump to the primary focus of our interview. According to this EY report, only about 20 percent of funded companies have women founders. This reflects great historical progress, but it also shows that more work still has to be done to empower women to create companies. In your opinion and experience what is currently holding back women from founding companies?
In order to start a viable business or nonprofit, you have to be bold, take the risk, believe in yourself, believe you can do it. It’s easy to have doubts but do the mental work necessary to not be self-limiting and know that you are not an imposter. You need to be 100% focused. When you get distracted and are torn between work and non-work, it’s a lose-lose situation.
There are internal barriers that we have to address. I do think women are still cautious when it comes to work. It’s good to take calculated risks, but ultimately you have to take the plunge. Men of the world aren’t holding themselves back! It’s like being a parent: there are lots of self-help books and classes you can take, but nothing can truly prepare you for the experience except for, well, experiencing it! Dive in — you may be surprised at how much you can accomplish.
And, no matter how confident you are, if you lack support systems, it can be difficult to get started. If a woman can’t afford childcare or college, if she lacks generational wealth or access to networking events, or, more simply, if she lacks resources and community, it will be very difficult to start her own business. Not impossible, but very difficult and stressful, enough to discourage many women.
Can you help articulate a few things that can be done as individuals, as a society, or by the government, to help overcome those obstacles?
For individuals: Support working women. We’ve evolved our society to be centered around the nuclear family, with much less community and intergenerational support. For many women, it’s a no-win situation. While we need systemic support, informal networks can fill a gap. If you find a resource that could help, send it to her; buy from women-owned businesses; spread the word about her new business once it’s open; if you’re family, offer to pick up her kids from school on busy days.
For society and culture: We need to reframe the cultural mindset. Expect the same caretaker responsibilities if it’s a two-parent household. There’s an unequal expectation of who should care for the children and manage the household, with women shouldering the lion’s share of the work. Any adult can change diapers, pick up and drop off kids, take sick days to care for them, make appointments, and pack lunches, so let’s stop perpetuating the myth that men aren’t good at or aren’t appropriate for that sort of work. And when more men do it, it will, no doubt, become viewed as more valuable to society. And let’s work to overcome the subtle societal implications that working women are not also good mothers. Workplaces can make accommodations that support career and family life. Covid-19 has shown us that flexibility in the workplace and with schedules does not mean less productivity.
The government: Pass laws to support childcare, paternity leave, equal pay enforcement, and tax breaks for working parents. Further, we need to adopt a systemic approach to building equity for women in leadership positions. This has been proven effective in especially in Europe. In fact, more than 10 years ago, Norway successfully legislated that at least 40% of corporate board seats be occupied by women. Waiting for companies to achieve this on their own accord is taking too long.
This might be intuitive to you as a woman founder but I think it will be helpful to spell this out. Can you share a few reasons why more women should become founders?
I think there’s a distinction to be made between “I want to be a founder” and “I want to solve a problem.” I have always been a problem-solver. From my childhood, if I saw a problem I looked to solve it. I saw litter and organized clean-ups of the river bank near my home when I was in elementary school. It’s the mindset. I didn’t start out to start a business. I started out to solve a problem, which turned me into a founder, an agent of change, a social entrepreneur.
We need more women in leadership positions, just as we need better BIPOC representation at the heads of organizations. Women see the world through a lens that is unique to our gender. Women very likely are better equipped to solve problems that women and girls face. We need that perspective to effectively address the needs of those we are serving. We need leaders in all sectors to truly understand the challenges and needs of all our constituents, audiences and consumers. As we shift decision-making to being more inclusive, we will be closer to building a fair and equitable society.
Frankly, if not us, then who? I started Beyond Celiac because no one was doing the work I felt so passionately needed to be done. It wasn’t a gender thing, but after working within the structure that existed prior to the founding of Beyond Celiac, it was clear that waiting for someone else was going to take too long. I had a young family, but I had a supportive husband and I had this urgent calling to help other women avoid the suffering that I had gone through. To not take action did not feel like an option.
What are the “myths” that you would like to dispel about being a founder? Can you explain what you mean?
It’s a myth that “founder’s syndrome” is inevitable. Being a founder in itself doesn’t mean that you can’t delegate or surround yourself with smart and talented staff and collaborators. Founders absolutely need to hire the best people, and hire people with different strengths — complimentary skills, people who bring something different to the table.
This is related to the myth that founders are unbearable bosses, driven, unforgiving, and relentless. I strongly value a workplace that embraces the full lives of my employees, and I deeply appreciate the viewpoints of staff and many trusted advisers. We work hard, but we work collaboratively, and the experience is much more enjoyable because we are all in it together. A significant number of my staff of 17 have celiac disease or a family member with celiac disease, or a related autoimmune condition. We are in this for the common cause of driving research for treatments toward a cure by 2030, which will improve the lives of millions, including people on my team. I am the CEO, but it’s only with the work of this group of dedicated individuals that we will achieve that goal.
Another myth is the Steve Jobs/Bill Gates genius-inventor building stuff in his garage or dorm room image. The notion that a good idea fueled with a lot of imagination does have a basis in reality. But in the case of Beyond Celiac, the “good idea” wasn’t a bolt of lightning out of the sky, it was borne of a lot of research about what was available and not available to solve the problem that I had learned about first hand. And I didn’t work alone, toiling on the project. I had to get support and partners and collaborators. The first big donation to Beyond Celiac was from Ed Snider, the CEO of Comcast Spectacor and the owner of the Philadelphia Flyers who himself had lived with celiac disease for years. There was no going it alone and in secret.
Is everyone cut out to be a founder? In your opinion, which specific traits increase the likelihood that a person will be a successful founder and what type of person should perhaps seek a “regular job” as an employee? Can you explain what you mean?
Not everyone is born to be a founder, but I think that “founder characteristics” can be cultivated. Founders need conviction, need to believe in their mission even when tasks seem too difficult, too impossible. They need to stay calm, be resilient, to be able to get back up and attack an issue with the same vigor as the first time.
If you want to be a founder, you need to get used to standing your ground. If you dread conflict, disagreements, and making decisions, you may feel more comfortable in a regular job as an employee, but if that describes you, then I challenge you to explore under what conditions you might think dealing with conflict and making decisions is worth learning to manage your discomfort. I didn’t start out to be a founder. I didn’t look around for what business I could start. I started Beyond Celiac because there was a problem to solve and the work wasn’t being done anywhere else. I don’t love conflict, but I do love that I can learn from it and take those learnings and turn them into information to make better decisions for the future.
Ok super. Here is the main question of our interview. What are your “5 Things I Wish Someone Told Me Before I Started” and why? (Please share a story or example for each.)
- Be able to reach out and ask questions. Ask and find answers. Surround yourself with really great advisors. You don’t need to be the smartest person in the room. Be yourself. Lead from your heart.
- Recognize the need for and build in operational efficiencies. In the beginning, you might feel like you can fly by the seat of your pants, but before you know it, you’re going to need a better plan. You’ll need a balance between ideas and operations. Take time to develop your plan and budgets and how you’ll build the organization. As you grow, you need to have the processes in place.
- Do your homework — market analysis, gaps analysis. Set your goals and stay with them. Focus is key. If you choose to pivot, be intentional. It can be tempting to chase shiny objects or deals that look too good to pass up, but if it’s not in line with your goals, it’s just a distraction in a nice suit of clothes.
- Focus on what you’ve done well, and don’t look back too long. Sometimes you’ll get scooped and the second mouse gets the cheese. You can’t win them all, so learn and move forward. Maybe you’ll be someone else’s second mouse next time.
- Be real. You are not superhuman, but this is all-consuming work. Be honest with yourself and have an honest understanding with your spouse if you are married about what it will take to be successful. It’s not easy to be married to a founder.
How have you used your success to make the world a better place?
The success of my organization, Beyond Celiac, has led to getting more people diagnosed with this insidious disease enabling them to live healthier and happier lives. Through the first-ever national celiac awareness campaign with CNN anchor Heidi Collins and a partnership with Quest Diagnostics, we helped increase the diagnosis rate from just 3% to an estimated 50% today. People are finding answers for health battles that have lasted for years, sometimes decades.
And part of living healthier and happier is making sure there is safe and affordable food. When I was first diagnosed with celiac disease, our community had to order gluten-free food from Canada. Gluten-free pasta was $12.99 a pound, and frankly, it was terrible. Through our work with food manufacturers and the restaurant industry, we’ve increased the availability and affordability of gluten-free food so that people can eat without fear.
However, we know that gluten-free diet isn’t always effective, and poses significant burdens to quality of life, travel, socializing, and dining out. Because of this, today we are accelerating research into celiac disease, which will have the future benefit of getting us to treatments beyond the gluten-free diet. Researchers are digging into how this disease works, which could lead to increased understanding of how all autoimmune diseases function, which ultimately could help the 50 million Americans living with autoimmune disease also live longer, healthier lives.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good for the greatest number of people, what would that be? You never know what your idea can trigger.
Overhaul the healthcare system to yield better care for all. We can take so many lessons from Covid-19. When there is adequate financial support and an incentive for companies to work together or by using open source data to increase the brainpower to solve a problem, we can get there so much faster. We need to promote equality & ensure that systems are in place to optimize care and not be solely about driving revenue. For a country as wealthy as the United States, we should be the healthiest country in the world. Let’s set that goal and figure out what we need to do to get there. Let’s inspire a movement. Let’s fix the systems that are broken.
Specifically for celiac disease, we need health equity and more empathetic doctors. So many in our community are told that they “couldn’t have” celiac disease because they don’t look like they have it, or that their symptoms are not “typical.” Part of achieving this aim involves improving the health system here in America so doctors can really see their patients and not feel rushed and overwhelmed by paperwork and an unending stream of patients. It’s a big job, but you don’t realize how much poor health affects every aspect of your life until it’s clear you may not get better. It’s terrifying. Preventative measures like annual screening covered by insurance can catch diagnoses before they become debilitating. In the richest country in the world, everyone should be able to get the care and testing they need without having to worry about money. And, my big hairy audacious goal is to prevent autoimmune diseases in the first place.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this if we tag them.
I have two! Celiac disease has largely been underfunded, and as a health-related advocacy nonprofit, we need investment from philanthropic and government leaders. On the philanthropic side, I’d love to have a meal with Mackenzie Scott to share with her our work in health equity and to get her perspective on the role of philanthropy in creating a more fair and just world.
The other is Joni L. Rutter, PhD. She is the head of the National Center for Advancing Translational Sciences at the NIH. “Translational Science” is defined as moving basic research as quickly as is safe and feasible to treatments to help people. Celiac disease is the only autoimmune disease with a known trigger — gluten — and I’d love to get her perspective on how we might start thinking in new ways to synthesize the current body of research in autoimmunity with what we know about celiac disease, and through what avenues we could increase funding for celiac disease research.
Thank you for these fantastic insights. We greatly appreciate the time you spent on this.
Female Founders: Alice Bast of Beyond Celiac On The Five Things You Need To Thrive and Succeed as a… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.