Rare Leader: Mark Stone, President and CEO, FSHD Society

The Basics
Name: Mark Stone

Title: President and CEO

Organization: FSHD Society

Social Media Links: 

Disease focus: Facioscapulohumeral muscular dystrophy, or FSHD, is a genetic disorder that leads to the weakening of skeletal muscles. Typically beginning in early teenage years with the loss of muscles in the face (facio), shoulders (scapula), upper arms (humerus), legs or core, FSHD can spread to any muscle. Around 20 percent will need a wheelchair by age 50. Over 70 percent experience debilitating pain and fatigue. There is no effective treatment or cure—but there is hope.

Headquarters: Lexington, Massachusetts

How did you become involved in rare disease: For 19 years, I was a lead pastor in churches, transitioning to an international relief and development organization for 4 years before making the shift to providing leadership to global health organizations. I made the transition to the PKD (polycystic kidney disease) Foundation and while the main thrust of that is not a rare disease, there is a rare form that’s very rare and it’s pretty severe. That’s how I got into the research-focused, patient advocacy world. The PKD Foundation was a fabulous training ground for six years. I was chief operating officer, and while there we went from $5 million to about $11 million and started several for-benefit subsidiaries. That began a journey I have been on for almost 20 years now.

Previous career: Pastor

Education: B.A. in psychology from Trevecca Nazarene University, master’s in leadership and theology from the Nazarene Theological Seminary, and a doctorate (coursework competed) in organizational growth and leadership from the Fuller Theological Seminary

The Organization
Organization’s mandate: To ensure that no one suffers the full effects of FSHD, and that involves treatments and a cure.

Organization’s strategy: At the FSHD Society, we have a four-point strategy that keeps us focused.  I keep reminding the staff that the challenge of leadership is deciding what not to do, not what to do. When I arrived at the FSHD Society, it seemed as though we were doing a lot of good things yet were a “mile wide and an inch deep.” Since then, we initiated the following four strategic anchor points and while they are broad enough, they are also focused enough. Simply put: 1) We’re here to accelerate research toward treatments and a cure, not just research for research sake. 2) We’re here to enlarge, engage, and empower an active community. Those are our two front facing programs because they are the only way to expedite therapies, treatments, and a cure. Freda Lewis-Hall, who’s the chief medical officer at Pfizer, gave a great Ted talk on this—collective intent and the patient advocate. It’s those two elements: bringing collective intent around what’s needed to advance research toward treatments and a cure and an enlarged and activated patient community. Those two things have made the difference in expediting treatments in every case. Our other two strategic initiatives are really in support of those first two. 3) We need to raise and leverage resources to fuel the mission, and 4) we need to ensure organizational capacity to accomplish the mission. Organizational capacity is not very sexy but is often missed as an essential ingredient in achieving the mission.  Simply put, organizational capacity states that if I have a 20-ounce glass and I need 55 gallons of something, a 20-ounce glass is not big enough, therefore we need a “bigger container” to accomplish the goal.

Funding strategy: We have diversified since I arrived here. I often joke that when I arrived here, we didn’t have a donor pyramid, we had a pencil. We had a few people supporting the organization heavily, and we appreciate that. And while there’s still an emphasis on donors and being a donor-driven organization, we’ve also grown our volunteer fundraising pipeline, through events—walks, runs, and rides that other organizations of our ilk do. We have been successful in expanding this revenue vertical by launching and establishing 30 volunteer-led, staff-resourced chapters around America, and now others are coming on internationally. We’ve grown to almost a million dollars in the last three years because of our volunteer event fundraising. The third element is partnership projects, what you might call industry investment. We’re doing work and taking the lead in the pre-competitive, preclinical space, working to eliminate obstacles to therapeutic development and clinical trial success – essentially operating as an honest broker. Because of that, we’re developing collaboratives and consortiums that fund projects that get the work done.

What’s changing at your organization in the next year: We’re going to an all-remote workforce. Of course, we’ve been that way through COVID. We’ve set up and pressure-tested virtual mailboxes, lockbox, and phone systems and in many ways increased productivity over this past year. Now we’re preparing to jettison our actual physical office in the next couple of months and be all remote.

Management Style
Management philosophy: I try to follow the advice of leadership author Max DePree, who stated that “the first obligation of a leader is to define reality. And the last one is to say “Thank you.” In between, you’re both a servant and a debtor.” I like that. I’ve led with that from an outward facing perspective. My leadership philosophy is informed by the understanding that there are three things a CEO needs to do, whether it’s the CEO of a small company or the largest company in the world. First, they need to cast a compelling vision and that vision has to be aspirational. But it also has to be attainable and it has to be actionable. That’s my definition of a compelling vision. Second, they need to run an effective and an efficient organization. And finally, they need to raise and leverage resources. Practically, I try to hire the best, and then indicate to them that “It is my job to resource you. By that, I mean, I’m going to give you everything I can possibly give you that helps you be successful. I’m going to try to eliminate every obstacle that I can eliminate that will keep you from being successful. And then I expect success.” It’s just that simple.

Guiding principles for running an effective organization: Over a lifetime of providing leadership to organizations, I came up with five principles of an effective organization. While being interviewed for my current position, I said, “Listen, there are the five principles that will be exhibited in this or any organization I serve, and if you don’t want these, you don’t want me. But this is what you will get with me.” The first one is the principle of community.  I just think we do it better when we do it together. We work together. We go in together. We play together. We fight together. Sometimes we fight with each other, but we do it together. And then we come out together. It’s that principle of community. The twin sister to that is the principle of trust.  You can’t have enriched community unless you have the principle of trust fully operational. This principle is outlined in Stephen Covey’s book on principle-centered leadership.  Covey illustrates a “pyramid of trust,” stating if I am trustworthy personally, and you are trustworthy personally, we can go to the next level of interpersonal trust, then managerial empowerment, and ultimately corporate alignment. So many corporations want staff and work aligned, but they don’t want to do the hard work of being personally trustworthy. The third one is the principal of an effective leadership environment. Knowing that I can cast a compelling vision, I could probably talk good leaders into working for us. But I know if I don’t plant them in the rich soil of a good environment, where they can grow and expand and maximize their leadership gift, then I won’t keep them. Likewise, any of us who are good leaders can be effective any place, even in a toxic environment. But how much more effective can we be if there is an enriched soil of a good environment that we can grow and produce in? My fourth principle is the principle of focus—this starts with the whole team developing plans of action that are reviewed on a semi-annual basis, holding ourselves accountable to the plan and results outlined. The individual plans of action are informed by our four strategic initiatives, which ultimately helps accomplish our mission. Simply put, that’s the principle of focus. The whole organization is focused around those four strategic initiatives. Our board, our finances, and our work is structured around those four strategic anchor points. The final principle is the principle of interdependence. We don’t have a typical flow chart. Our staff realize that, while they might work in one department, they can’t do their work successfully if they don’t collaborate with other departments because they hold some keys to their success. Success requires working collaboratively.

Best way to keep your organization relevant: We have to maintain a constant attitude of exploration, innovation, and evaluation. Those are terms that people throw around, but when you get down to implementing that throughout the whole organization, you can keep on the cutting edge without getting on the bleeding edge.

Why people like working with you: I cast a compelling vision, I resource my staff well, and I go the extra mile to let them know what an impact they are having.  

Mentor: My dad. He’s a great leader of wisdom and incredibly wise. I recently heard my son quoting one of his gems. He asked him, “How did you do what you did for so long in such an environment. He said, “I just tried to provide gentle pressure in a positive direction.” Unlike my dad, sometimes I apply extreme pressure, which then sends the whole thing in a negative direction, so I try to keep that and a lot of other sage advice he’s given me in mind.  He has certainly been a powerful influence that has helped me become the leader that I am today.

On the Job
What inspires you: You can’t be around our families without getting inspired. Many of our people are having physical disabilities, yet the glowing optimism they have, and the innovation that they bring to their daily life, inspires me. I laid out our path forward to the executive committee at an all-day meeting when I first arrived. At the conclusion of the day, I looked up at the white board, and I said, “I don’t know about you, but when I look at that, it makes me tired because I know what it’s going to take to climb this mountain and achieve our goal. But then I looked at the committee, those affected by FSHD and said, “But how can we not do this”? We’ve gone on record, with some criticism, saying, “We’re going to have treatments to our families by 2025.” I put a countdown clock on my phone, and I look at it every day. Our families inspire me to keep going. We’ve got to find a solution for this.

What makes you hopeful: In rare disease in general, I see a lot of clinical development, a lot of approval of therapies, some actually having a cure of sorts, in particular in the neuromuscular space. It’s enhancing our therapeutic development in our specific disease too. One might say that “a rising tide lifts all ships.” I see the tide rising, which is beneficial for all of us, especially in rare diseases. The path the FSHD Society is on is a well-worn path with scores of other organizations, just like ours, having successfully navigated this path. All I’m doing is following the breadcrumbs they’ve left.

Best organization decision: The few times I hired right. I am a firm believer that everything rises and falls on leadership and no organization ever rises above the level of leadership. As such, when I have been able to raise the level of leadership, it’s raised the level of the organization and the impact of that organization. Thinking back to those few times when I’ll say that I got it right and brought on great leaders, that made a dramatic impact.

Hardest lesson learned: I’ve had to learn to guard against overextending. I learned this at the PKD (Polycystic Kidney Disease) Foundation. We had a very aggressive goal set out by our board where we were going to grow by 25 percent compounded annually over the next five years. That equated to taking a $5 million organization and growing it in five years to $15 million. In three years, we were at $11 million, which was fabulous. We were making an impact in the research. We were funding and transitioning that research into the preclinical and clinical space. It was exciting times. When I joined the organization as COO, there were 20 staff. And on our way to $15 million, we grew that to 60 staff. We developed a regional operation. We had 60 volunteer-led, staff resourced chapters. We were growing and expanding business units, and then the Great Recession hit. While we were able to maintain our growth, I recognized I had overextended the organization and overbuilt the capacity on our way to $15 million. We had to go through the painful process of letting 25 people go. Going forward, I’ve always tried to be prudent to expand capacity as needed, but to guard against overextending.

Toughest organization decision:  The toughest decision I’ve had to make has been when I’ve had to transition staff who had really become friends and were doing an admirable job, because of an organizational shift away from their expertise. Fortunately, I’ve only had to do this just once or twice but it’s an incredibly difficult process.  Those are definitely the hardest decisions. They are the things that have kept me awake at night.

Biggest missed opportunity: I don’t know that I have been given an opportunity I said “no” to and it went on to be a blockbuster that I should have latched on to it. I’ve tried to capitalize on every opportunity that’s come along. Right now, we’re having to wait until we get enough buy-in to move things forward. Had we had the resources two years ago, we would have already had some of these obstacles out of the way. In that context, my fear is that the delay will produce ripple effects in therapeutic development, clinical trial readiness, and regulatory approval, which would be a huge, missed opportunity.

Like best about the job: I enjoy taking a diverse group of people, challenging them to work toward a common goal, having them achieve that goal while enjoying the trip. That’s the quintessential thing that I enjoy most about this organization and about other organizations I’ve had the privilege of serving.

Like least about the job: The resistance that some of us in the rare disease space experience in trying to get various stakeholders to work together toward a common goal. Silos that get built. Knowledge and insight withheld.  Research is protected.  I do understand and acknowledge that papers have to be written, grants submitted to keep labs open, and industry has to compete. But there are areas we can collaborate for the benefit of the whole community. Industry can involve patient organizations earlier which might prevent them from writing bad protocols for clinical trials that will ultimately fail.  Researchers can be open to developing a deeper understanding regarding what is clinically significant and necessary from a regulatory standpoint to get a drug to market.  And patients can learn the significant contribution they make when they become educated, empowered, and active in the process.

Pet peeve: Disorganization. On a personal level, I’m kind of an anal retentive. I fight against that. I like things to be organized and move forward. Even in the mess, I want to try to make sense of the mess, and move forward, and bring it about.

First choice for a new career: Let’s call it a transition consultant. One might call it an interim CEO role. I’m good at ascertaining an organization’s asset in their particular ecosystem, and then structuring a way for them to maximize that asset in their ecosystem, grow, and cast a compelling vision to bring people along with me. Once that’s done, I’m ready to say, “Okay, what’s my next challenge? Where’s the next hill?”

Personal Taste
Most influential book: Leadership in Turbulent Times by Doris Kearns Goodwin. It talks about the leadership of men like Teddy Roosevelt, Franklin Roosevelt, Abraham Lincoln and what we can learn from them. It’s not only interesting, but sword sharpening.

Favorite movie: There are two. Extraordinary Measures with Harrison Ford. It’s the story about Pompe disease and how they went over and above to find a treatment for it. Also, Apollo 13. They are both true stories. Both of them talk about overcoming obstacles to achieve the goal. Those are just inspirational movies.

Favorite music: I don’t listen to music a lot, but when I am on a car trip, I listen to country music. It tells a story and is oftentimes funny.

Favorite food: Pizza would be great. If I wanted to go to a nice restaurant, it would be steak.

Guilty pleasure: Love donuts and I can’t pass up carrot cake.

Favorite way to spend free time: Doing anything with my family. During this time, I located back to Kansas City where my kids and grandkids are so I can spend my free time on ball fields. My wife and I like to do active things and travel. Doing anything with my family is a joy.