Fighting Founder’s Syndrome And More Leadership Lessons For Leaders In Life Science And Healthcare With Mary McGowan
The founder of any organization has to be the one in the driver's seat. They are the leaders that pave the way for the organization to grow. Sometimes, they also need to know when the best time is to let go of their position. Founder's Syndrome is real and can destroy companies from the inside out. Having the proper leadership skills is needed so that it doesn't happen.
Join Scott Wagers as he talks to Mary McGowan, the CEO of the Foundation for Sarcoidosis Research. They discuss leadership in life science and healthcare in the context of improving the lives of individuals with Sarcoidosis, a disease that affects 1.2 million people worldwide for which there is only one treatment.
Scott and Mary touch base on topics such as founder's syndrome and what it means to persist in the face of adversity. They also, surprisingly enough, discuss dog sledding, race horses, and racecar drivers.
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Listen to the podcast here
Fighting Founder’s Syndrome And More Leadership Lessons For Leaders In Life Science And Healthcare With Mary McGowan
In this episode, we're going to shift gears a bit and move from academia to disease foundations. I'm very happy to have Mary McGowan, who is the CEO of the Foundation for Sarcoidosis Research. As you'll find out, it's a pretty wide-ranging conversation. There are lots of inspirations for how to be a leader, persist as a leader, as well as to deal with some challenging things such as Founder syndrome, which you'll find out what that's about. Sit back and enjoy. You'll find a lot of value in this episode.
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I'm Mary McGowan, the Chief Executive Officer of the Foundation for Sarcoidosis Research, also known as FSR.
Mary, great thanks for coming on. When I came across the Foundation for Sarcoidosis Research, it was something that, from my past having treated patients with sarcoidosis, caught my eye. That's one of the reasons I wanted to have you on. Before we go into much detail, what's sitting around you? Give something you can describe for the audience. Give us a little bit of flavor of who you are.
I am here from Rural West Virginia, known as Canaan Valley. We are up here in Bear Country. Thank you for that question. It's an honor to be here in Bear Country to talk a little bit about healthcare on this show.
I've not interviewed or talked to many people in rural West Virginia in this context. That's fantastic. Let's start with this. What impact do you intend to make in your role?
In order to answer this question, I want to go back to how I ended up in the patient advocacy space, working for nonprofits in the fight against chronic diseases in general. Going back in time involves a little bit of a personal story. When I was five years old, I was admitted to Sloan Kettering Cancer Institute in New York, where I lived and was a patient for almost a month. The doctors in my family thought I had cancer, but I was one of the very few lucky children who were admitted to Sloan Kettering. It turned out that I did not have cancer. In the follow-up to my surgeries and my stay at Sloan Kettering, I visited the outpatient cancer center frequently year after year. That's where all my doctors were.
I grew up around a lot of illnesses and deformities. I learned early in life the importance of access to good quality care and the need to speak up for patients and the patient voice. Upon completing my Master's degree from George Washington University, I immediately reached out to the American Academy of Pediatrics as I wanted to give back to my good fortune and to speak up for our nation's children who could not speak up for themselves where I worked for eighteen years.
That served as an entrée into my patient advocacy work. Fast forward to my role as CEO of the Foundation for Sarcoidosis Research. It's my goal to ensure that no patient diagnosed with sarcoidosis feels isolated or doesn't have access to good quality care, no caregiver feels lost or alone when seeking resources to support their loved ones, no clinician is struggling for a community to support them in their care and treatment management, and finally, that no research path is left unexplored in the pursuit of earlier accurate diagnosis, better treatments, and ultimately, a cure for sarcoidosis.
I'm also a firm believer that progress can only be made through strong collaborations. At FSR, we have a very strong, collaborative spirit. As a small to a mid-size nonprofit organization, we only have ten staff members. I recognize that we can't fight this fight against sarcoidosis alone. Sarcoidosis impacts under 200,000 individuals in the nation but 1.2 million people worldwide. It's my strong belief that we must align ourselves with entities that are much larger than we are to advance our mission and have the global impact that is needed. Those are just some of the things that I hope to have an impact on as CEO of FSR.
“Sarcoidosis cannot be fought alone. Progress can only be made through strong collaborations.”
Not everybody in the audience knows this, especially since you said how it is somewhat of a rare disease. What is sarcoidosis?
Sarcoidosis is an inflammatory disease characterized by the formation of granulomas, which are tiny clumps of inflammatory cells that can arise in one or more organs of the body. When the immune system goes into overdrive in too many of these clumps form, they can interfere with an organ's function and structure. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue.
The disorder affects mostly the lungs. It's in the lungs in approximately 90% of sarcoidosis cases. It can affect almost any organ in the body. Despite increasing research advances, sarcoidosis remains very difficult to diagnose, with limited treatment options and no known cures. As a matter of fact, there's only one FDA-approved drug to treat sarcoidosis.
As we were saying before we started the interview, I practiced pulmonary medicine in the earlier part of my career. Sarcoidosis was one of the more challenging things we would have to either diagnose and/or treat. It's a condition that is under the radar sometimes. It needs much more understanding to make it further. With that, what's the most fulfilling project or outcome you've experienced?
I'm going to cheat a little bit on this question because, during the past few years, FSR has seen tremendous growth and has resulted in several significant impacts. I'll go through them briefly. It's hard to choose one. As the leading international organization dedicated to finding a cure for sarcoidosis and improving patients through research, education, and support, we're on the front lines every day advocating for those living with sarcoidosis.
We have spearheaded tremendous interest in sarcoidosis research in the last few years, resulting now in as many as seven potential clinical trials in the space when just a couple of years ago, there was only one active trial. Our engagement with the NIH and FDA to help accelerate research and drug development has grown and taken a stand. Our increased global awareness of sarcoidosis has brought resulting in over one million media impressions from just two brief national campaigns. We had this past 2021 one million media impressions.
The improved clinical engagement education expanded support for sarcoidosis patients worldwide. All of that being said, I believe the formation and launch through a press release of the FSR Global Sarcoidosis Clinic Alliance, which resulted in 22 founding members coming onto this new initiative in just three months, offers the organization and sarcoidosis at the global level real impact and promise. We're looking forward to continuing to grow this new strategic direction of FSR at the global level. The clinics, the organization, and the patients are excited about it.
That's a very dramatic impact or outcome. What do you attribute that to? Why the change? Why did it start to take off? Was there something FSR was doing?
New leadership, when it comes to an organization, can bring new ideas and innovative and creative thoughts. I joined a few years ago as CEO. I brought on some new leadership and lead positions, created some new positions, and brought in some strong leaders I've worked with in the past. Since being on board, I have worked with Dr. Louise Perkins, who is the chair of our board. We brought on five new board members offering a lot of diversity, new energies, and new ideas as leadership in the organization. We worked with the board in the fall on a strategic plan for the next 3 to 5 years for FSR. As part of that process, we brought this creative energy and new thoughts and directions, including the Global Alliance, to that strategic plan. We are in the process of implementing the strategic plan, and it's having extraordinary results.
When I joined FSR, I was doing a lot of reading about sarcoidosis. It became evident that women of color have the highest prevalence and, by far, the worst outcomes. We wanted to do something about that that had not been done before. That is to bring awareness to the African American women and clinician communities and make and try to make a difference in this. We launched this Ignore No More Campaign, and that was one of the national campaigns I was referring to. That in itself brought over 500,000 media impressions with incredible media engagement in this national campaign about this issue. These ways of looking at things a little bit differently, acting upon them, and engaging the team and leadership in these questions and thoughts can lead to these extraordinary types of outcomes.
Did that campaign come out of the strategic plan?
It was started earlier before this strategic plan. Early on, when I first joined, they kept this coming up in the reading of materials. I said, "We have to do something about this." As we were working on it, we put together a clinical committee of four esteemed leaders who had some publications on this topic. We put together a patient advisory council. It was interesting. We had put out an application only for two weeks, and we had over 70 African American women apply to be part of this patient council, which speaks volumes to the need and the passion for this. Unfortunately, we only had room for fifteen, but the other women stayed connected and helped us amplify the messaging throughout the campaign.
Something amazing happened. Jeryl Prescott Gallien, an African American actress on The Walking Dead and All The Queen's Men, has been living with sarcoidosis for many years and was most diagnosed with cardiac sarcoidosis. She found out about the campaign, contacted us, and said, "I want to be a part of this." She did an amazing video PSA that instantly got 1,000 views as soon as it hit YouTube. She has been an extraordinary spokesperson on this campaign, helping us to amplify the message.
We also had 23 partners, some sarcoidosis clinics. We had the Association of Black Cardiologists as an example of a medical society. We had church groups such as Balm in Gilead. We had government partners such as The Heart Truth® campaign. It was an amazing collaboration of many who wanted to get involved in this national campaign and work with FSR to help amplify this important messaging and work towards making a difference for African American women in sarcoidosis.
It all began by bringing together the different stakeholders, the patients, and the clinicians.
It was brought about by recognizing the need like, "We need to do something about this. Here's a serious issue that I was not aware that we as collectively as an organization had approached before." Working collaboratively with the clinic engagement committee and the patient committee, and getting everybody together to work in collaboration on this national campaign and grow it to be something that it was, and the great success that it was, was a result of these terrific collaborations and working collectively. Being recognized by the media was a real strong point for this national campaign.
I want to also dig into the strategic plan. How important is that? I don't think everybody thinks or works in it with a strategic plan, whether you're a foundation or your own individual career. How important do you think strategic planning is in your experience?
I believe a strategic plan is critically important for an organization. Even the process alone is helpful, in my experience. The opportunity to stop with leaders of the organization and collectively come together to look at what is working, maybe what is not working, how we elevate and amplify the things that are working, identifying the needs and the opportunities that we see and hear from the community, and working together to come up with a take action plan are important. Years ago, people used to do long-term strategic plans, which I'm not sure in nowaday's fast-moving world is that effective anymore.
Founder Leadership: Strategic planning is critical for any organization. It's an opportunity for leaders to collectively come together and see what is working and what isn't, so they can come up with an action plan.
“I believe a strategic plan is critically important for an organization. Even just the process alone is helpful. – Mary McGowan, CEO of the Foundation for Sarcoidosis Research”
Up to a 3 year or at most 5 year strategic plan is very helpful, particularly if there's flexibility in the plan to review every year and make adjustments as the organization is implementing these identified goals they have set out for itself. An important part of that process is everybody's on the same page. We all know where the organization is heading. Without that strategic planning process, sometimes, the vision and communication between the CEO and the board can become blurred a bit. The strategic planning process helps identify that as well.
The third thing I will add is it's important for an organization to share its strategic plan with its stakeholders, industry partners, collaborators, and all the key stakeholders that they work with, inviting them and learn about the strategic plan and even the beginning, in the process of being part of the strategic plan through focus groups or surveys. We did that at FSR. Getting that external view and input is critically important, and to report back to them with thanks for helping us with this new vision for the organization's efforts.
You did engage the stakeholders in your planning process.
Absolutely, the partners, patients, researchers, clinicians, and hospitals. We did. We felt that was critically important as part of that process.
I want to shift gears and focus a little more on you and ask you a question. What was the lowest point in your career? How did you get through it?
The lowest point in my career was dealing with Founder syndrome. For those who may not know what Founder syndrome is, it's a difficulty that can be faced by organizations where one or more founders maintain this disproportionate power and influence following the initial establishment of the organization. This can lead to a wide range of problems, particularly when an organization is going through a transition. Frequently, the problem arises because you have this incredible, passionate, dedicated, dynamic, visionary, entrepreneurial leader who started an organization. What can happen over time becomes challenging to break through any different or variant vision for the organization or any internal quest for change or growth.
Founder Leadership: Founder's syndrome is where one or more founders maintain a disproportionate kind of power and influence following the initial establishment of the organization.
While it's most often found among founders, the syndrome can also manifest itself in non-founders who have been in a leadership role for seven or more years with an organization or even with clusters of board members who identify themselves as founding board members. It is a real thing. There's been a lot of literature and articles written on Founder syndrome. The lowest point of my career is working through that very challenging issue in an organization. Many organizations don't make it through that transition because it can become that serious. I did experience that.
What's the best way to deal with Founder Syndrome?
It's to recognize and be able to have candid conversations and communications with the founder. The whole reason typically why a founder starts, at least I can speak in the nonprofit healthcare industry, is to speak up for patients, to advocate for patients, make a movement, and to be able to have a candid conversation that identifies like, "You have done extraordinary work here. You've started this organization. It's been amazing watching the growth and the partnerships, etc." To have them understand what Founder syndrome is and try to get them to see themselves in that light, which can be challenging, while at the same time recognizing their incredible leadership, it's time to move aside.
They've done what they should be doing on this journey, and it's time for new leadership, changes to be made, and to continue the incredible momentum and growth of the organization. It's taking it outside. It's no longer about them as a leader. It's about the organization, mission, and being the best we can be. That's a hard transition when somebody gives birth to an organization. They put their heart and soul. It was their passion. It was their leadership. It was everything, their heart and soul, into this. That's a very tough thing to give up. At the end of the day, in most cases, it's the right thing to do.
I could imagine it's also something that's easy to shove under the rug. This is an issue. From what you've described, it's the intuitive thing of going into that conflict.
It's correct. It's a very tough spot to be in as a member of a governing board in an organization that is struggling with Founder syndrome because the thought of the many board members can be, "We can't possibly remove Julie Smith from this leadership position. She started the organization. We owe everything to her. She should be able to continue running this forever." For many board members, and you can understand why, it's a challenge because they understand and empathize with how the organization started, why it started, and this individual leader who got it to the point where the organization is.
It's tough to be the bad guy on something like that, which they may see themselves as in a transition like that. Many leaders in the world nowadays, as people understand this complex syndrome, do recognize that it's the right thing to do for the organization, the mission, and the thousands of patients or community members that are out there relying on continued growth, change, innovative ideas, and things that sometimes come from new leaders.
When you make that confrontation, is the idea to open up to having more leaders? It sounds like when you come to an organization, you like to bring in new leaders and enable people to be creative. Is that the concept?
That's an important thing in terms of making significant changes in an organization. The question becomes, "What are those changes? How do you get there? What message are you sending to leadership, community, staff, and the team?" Communicating the vision, these new positions, and the reason for the new positions are critically important. I'm a huge believer in the success of an organization putting the most emphasis on hiring the right team. I was impacted by a good book. I'm sure many of your readers have read it. It's Good to Great. The whole emphasis of the book, which has always stayed with me since the night I was reading it, is you have to have the difference between good and great organizations. The author identifies that.
It's about having the right people on the bus and the people in the right seats on the bus. I spend a lot of time thinking about that on an ongoing basis, "Do we have the right people on the bus? Are they sitting in the right seat? In other words, doing the right things, leveraging their experience, expertise, and passion?" That's critically important, along with company culture. Company culture is critically important to any dynamic team. The opportunity to be able to empower your team as individual members in their own way only reflects back the fact that they empower you as a leader. I got a lot out of that book. I spend a lot of time there as we continue to grow at FSR.
“The opportunity to empower your team as individual members in their own way reflects the fact that they empower you as a leader. – Mary McGowan, CEO of the Foundation for Sarcoidosis Research”
I laughed a bit because I'd read the book, so it was very familiar to me. I think about it as the bus and the seats on the bus quite a bit myself. Out of the ten or so people who have been interviewed in the show, it's already been mentioned once.
It's not surprising.
It's something highly relevant. That's Good to Great by Jim Collins. What's something that you do when nobody else is looking that improves your leadership skills?
“What do you do when nobody else is looking that improve your leadership skills? I do a lot of listening. – Mary McGowan, CEO of the Foundation for Sarcoidosis Research”
I try to do a lot of listening. I listen to patients and the care partners. I listen to the doctors. I listen to the hospitals and the researchers. I listen to other leaders. With all that listening, I try to reflect on how FSR can make a difference for our entire sarcoidosis community with all of that information. I've talked about it. I have an extraordinary team at FSR, and I view my job at FSR as listening to them every day and not necessarily telling the team what to do, but by listening to them, having them tell me what to do. I believe that the best thing you can do is hire the right team members, figure out how you can empower them, and how they can empower you in turn through trying to understand their struggles, challenges, successes, and goals. Putting that all together is critically important. It's at the top of my list. I try to listen to develop my leadership skills as much as possible.
Do you have a way that you listen? Do you practice active listening? Do you take notes?
I'm not a note-taker, interestingly enough. Sometimes I do, but mostly not. It's just reflection. I'll hear something and try to leverage that information, "What can I do with that? It's important information. I may not have a use for it at this moment, but it's important enough that I will reflect on it later to try to unpack it. How can I grow from that? How can we grow as an organization from that?" Every conversation that you or at least that I have every day in my day-to-day meetings with people, external as well as internal, I'm always learning something.
It's great to learn, but the real challenge is how you implement something out of that learning. How do you move that forward? How do you make a difference from something that you learned? You just don't want to learn it, and then it stays with you in your brain and doesn't go anywhere. That's not helping anybody. It's about taking those learnings and turning them into real positive action that is going to have a significant impact on the community.
There's also this concept. When you're in a conversation, you shouldn't be thinking about what you're going to be saying next. You should be thinking about what the person's saying to you. You should be listening. That's exactly what you're talking about here. I can imagine you have a lot of competing priorities. How do you manage all your competing priorities?
That's a challenge. I'm fortunate to work for a small to mid-size organization. I have weekly meetings with all of my team members. Part of it is managing the things that I'm trying to move forward, working with the team members on those individual meetings, and making sure that we are prioritizing what we're doing. I know it sounds administrative type of thing, but we have a lot of trackers at FSR.
We meet as a whole team regularly to move the needle forward on these important things that are in the trackers with status updates and so on and so forth. I know it sounds administrative, but it's something that we instituted in the last few years. It has made a difference in communicating with the team, keeping the vision, keeping everybody on task, and for people to help one another when they're having some challenges with moving something forward. It works for us. That helps me as CEO as well.
Are the trackers key performance indicators? Are they numbers? Are they goals?
They're goals with assignments and broken-out goals like, "Here's an overall goal, but these are the tasks that need to get to that goal." Accountability is what it really is. It's holding accountability to our deliverables, projects, partners, and key stakeholders and making sure that nothing slips through the crack, and then reporting back on those. That's critically important as well in terms of these competing priorities and taking the time to report on them, celebrate them, and move on to new priorities. That's part of the process that is important.
Do you have any habits or rituals that have contributed to your success?
Keeping communication front and center is critically important. Communication is at the heart of our day-to-day success. That is a ritual that I try to work with the team on an ongoing basis and our external stakeholders as well. It's critically important to have that in everything that we do so that there's no misunderstanding and that we are very clear on what we are accomplishing, where we're headed, to address any issues that might arise in an open door policy and a ritual that we can come together and have candid conversations about work and the efforts.
This question I've asked people is, what do you read? Do you read journal articles or books?
I try to read a little bit of everything. When I travel, I love to travel on airplanes because it's time away from my day-to-day routine. That's where I spend a lot of time reading Harvard Business Review, Fortune, and Forbes Magazine. I'm at the airport, and I'm looking at these magazines and having the time to read things about leadership and challenges that organizations are undergoing. I see myself in those articles and learn a lot from them. My favorite newspaper is The Wall Street Journal. I love The Wall Street Journal. I read that religiously. I found a lot of partners through The Wall Street Journal. I get a lot of ideas through that.
I try to read leadership books on a pretty frequent basis. I should probably be spending more time reading some good books. I like Good to Great. I try to read those types of books to keep me current and pick up some new learnings about leadership, the nonprofit running of an organization, and other issues. I like participating in forums or coalitions, hearing again from other leaders, and working with them collectively on unique initiatives or problem-solving. I find that rewarding as well.
A few years ago, I had a conversation with somebody. It was when I was trying to write a book. They said, "No one reads books anymore." I'm trying to disprove that. So far, it's been pretty much disproved. Here's one last question. What advice would you give a younger version of yourself?
I'd give a younger version of myself a lot of advice. In terms of working for a nonprofit in the healthcare industry, the advice I would give was, first of all, to keep the patient voice at the center of everything you do. It's critically important. Empower those patients and have them work with you. You got to find your passion. One of the most important things in hiring and working with people is getting with passionate people, understanding what that passion is from that individual, and being able to help flourish that passion and leverage the energy and desire to make a difference. That's critical. No matter what happens, remember that you are on your own unique journey.
“In healthcare, it’s important to keep the patient’s voice at the center of everything.”
There will be many challenges that come along, good, bad, and indifferent. Learn from them. Approach it with, "This is your journey. These are your outcomes. Be true to yourself and go with your gut and passion." That ends up in a very positive outcome, and to always pay it forward. There are so many mentors and extraordinary leaders in the healthcare industry. It's important to learn from those who are interested in mentoring and that you learn from.
The importance of paying it forward to help others is as critically important, if not more important. Always try to keep that in your day-to-day activities, paying things forward, sharing learnings, bringing people along who may be struggling or not have as much experience, and be part of that mentorship that leads to extraordinary things, particularly in the rare disease space.
I learned about Founder syndrome, which is something I didn't know much about. That's been great. It's been a great interview. Is there anything else you want to bring up that you haven't had a chance to speak about?
One of the things that are interesting is who are leaders that inspire people. I tend to get a lot of my inspiration from true life stories through movies and books. I'll give you three of my top favorites. The first one is Togo. I don't know if you ever saw the movie Togo. Togo tells this amazing true story in 1925 of this gentleman. His name was Leonhard Sepalla. He was a champion dog sledder tasked with delivering this antitoxin serum to the town of Nome, Alaska, in this extreme Alaskan weather. They couldn't fly this life-saving medicine to thousands of children who were dying. It was all about this champion dogsled trainer Sepalla and his dog Togo who made this 600-mile journey in this extreme weather to deliver this antitoxin.
There are so many leadership lessons in this little movie about this lead dog and the team he is leading as a twelve-year-old husky. One of the main leadership things is as a puppy, this dog was almost unmanageable. He was very mischievous. They were trying to get rid of him. He was so bad, and he kept coming back. It was from this incredible passion and his strong heart that he had, even as a young dog, that he was trying to emphasize and have people pay attention to him. It wasn't until the dog sledder gave up and put him out there with the other dogs, and was truly amazed that this dog, in fact, was an extraordinary leader.
I think about that story and about the corporate world that we live in. Sometimes you have these disruptors, and sometimes they get fired. The lesson here is to try to understand that, to encourage some of that, to see and unpack that something extraordinary, this disruption that people need to pay about it. That's one. The other one is Seabiscuit. What a great leadership movie that is. Not only was Seabiscuit an amazing horse, but he also connected the lives of all these unlikely individuals into this cohesive force of this unified vision, passion, and execution of this team, willing to take risks and be defeated. There are so many incredible leadership things in the movie Seabiscuit.
Founder Leadership: In the corporate world, you will sometimes have disruptors. These people can sometimes be fired, but they can also sometimes be right. Sometimes it's good to encourage this disruption.
My final favorite one, and I'm not by any means a race car enthusiast, but my word, what a great movie, Ford v Ferrari. There are so many incredible leadership lessons and quotes that you can derive from that movie about this race car challenge and many things about playing to their strengths. When Shelby is saying, "We're lighter. We're faster. If that doesn't work, we're nastier." There are these different amazing quotes that are important lessons throughout that movie. As leaders, if we take the opportunity to watch these movies and read these books with these things in mind that we get a lot of lessons and learnings out of them.
Those are great examples. It's something that we all have to watch and watch again. What you're saying is also belief in your mission and grit or persistence.
It's persistence, and it's recognizing leadership and leaders. Like in the movie Ford v Ferrari, with Ken Miles, the driver, there's a scene where he's on the raceway with his son sitting next to him in the evening. He said, "Look out there. Out there is the perfect lap. Do you see it?" His son says, "I think so." Here's Miles's response, "Most people can't," and some people can, with that extraordinary leadership and vision. It's tapping into that and showing that to others. That's critically important.
There are other things to tap into that extend from that. There's a book called The Art of Learning by Josh Waitzkin. It's a fantastic book. It's about an individual who was a chess champion and then went on to become a Tai Chi push-hands champion. When you're doing that, your learning is about small, incremental things, going for the perfect lap, and being passionate about that aspect of it. It's also perhaps about the whole idea of flow. If you get into flow, the perfect lap, I would imagine you're in this flow state. That's a very interesting thing to think about from the leadership perspective.
They talk about the perfect lap. That was Miles' approach, "I may not always do the perfect lap, but I can try." That's what it's about, having the vision for what it is, the reach, the goal, and the know-how. If you don't get it on one lap, get it on the next lap. Keep adding. To your point, it's persistence.
“Having a vision is about persisting until you get the perfect lap. – Mary McGowan, CEO of the Foundation for Sarcoidosis Research”
That's a great way to end. Thank you very much for coming on and taking the time to be interviewed on the show.
Thank you. It was an honor to be interviewed. I enjoyed the conversation and the very thoughtful questions.
You're welcome. Have a good day.
You too.
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About Mary McGowan
Mary joined the Foundation for Sarcoidosis Research as the organization’s first-ever Chief Executive Officer in 2020. As CEO, Mary serves as the primary representative and spokesperson for FSR and leads the organization’s strategic vision with patient engagement, strategic partnerships, fundraising, advocacy efforts, program direction, and an aggressive communications and research agenda.
Mary brings 35 years of nonprofit leadership and management experience to the role. Prior to joining FSR, she served as Executive Director at The Myositis Association (TMA.) As Executive Director of TMA, McGowan was featured and highlighted as a preeminent rare disease leader by numerous entities including American Autoimmune Related Diseases Association, Global Genes and the National Organization for Rare Diseases for her innovative national campaigns including Women of Color and Myositis and her leading telemedicine initiatives for autoimmune patients during COVID-19.
Prior to her time at TMA, Mary served as CEO of WomenHeart: The National Coalition for Women with Heart Disease. During her 8 years with WomenHeart, McGowan ensured the organization’s long-term growth and sustainability as the leading voice for the 48 million American women living with or at risk of heart disease. McGowan also served as Executive Director of the Allergy & Asthma Network, the leading nonprofit organization dedicated to eliminating suffering and death due to asthma, allergies and related conditions. She held various positions with the American Academy of Pediatrics during her service of 18 years. McGowan earned a Master’s Degree in Human Resources Development from the George Washington University and a B.A. from Trinity University.
