RARE Daily

Rare Leader Profile: Mark Dant, Executive Director of The Ryan Foundation

May 9, 2019

The Basics
Name: Mark Dant

Title: Executive director

Organization: The Ryan Foundation

Social Media Links:

Disease focus: MPS 1 and related disorders

Headquarters: Louisville, Kentucky

How did you become involved in rare disease: Our only child Ryan was diagnosed with MPS I at 3-and- a-half. We took him for a pre-daycare physical and the pediatrician noticed his head and liver were large. He made an appointment with a geneticist because he was so concerned. The geneticist told my wife Jeanne he thought that he had a disease called MPS I. I thought he was wrong because there was nothing wrong with Ryan. He played baseball and was quite normal. I was a large person and my head and stomach were large. He was diagnosed two weeks later with MPS I. He told us Ryan wouldn’t live past the age of 10 or 12. There was no treatment and no therapy. There were no drug companies or many scientists working on the disease. There was no hope. We cried and slept on the floor next to Ryan’s bed. After a year we started a nonprofit and I tried to learn as much as I could about MPS. We realized science would be the answer.

Previous career: Retired in February 2016 as assistant chief of police in Carrollton, Texas after 32 years on the force.  

The Organization
Organization’s mission: Fund science to find treatments for MPS and other rare diseases. We try to fill the funding gap between major grants from NIH and other organizations. We found good science was occurring, but oftentimes the science would stop or go away between funding. Our objective was to build a bridge between basic science and therapy. That’s the huge gap. Companies come in later on, but the science has to be developed to where they have an opportunity to succeed. Unless the science continues, therapies stop. In rare disease, we don’t have time to wait. Our mission is to move science along by building the bridge to get over the funding gaps so science can continue to move at a good, steady pace.

Organization’s strategy: To continue fundraising even without a specific project. In parallel with that, to search internationally for projects where science looks strong, but funding is slowing the pace.

Funding strategy: We call it connecting the dots. Finding philanthropic individuals who understand the importance of science. We meet with philanthropists interested in changing tomorrow through science. We meet with them to discuss specific projects when they are available and connecting the dots with those philanthropists and specific scientists.

What’s changing at your organization in the next year: We continue across the same path looking for projects that are promising but stalling. We picked up some studies of Humira in MPS and lysosomal storage disorders. What we’re finding is that in MPS diseases, enzyme replacement therapies don’t work on many things—bone, ligament, tendons, heart valves, and brain obviously. Enzyme replacement therapies have saved these kids lives. But as they are becoming adults, there are quality of life issues—pain and joint stiffness. Humira has showed promise but needs to be studied in depth.

Management Style
Management philosophy: We have no paid employees. Our philosophy has always been raise a dollar, find a scientist or project. Our philosophy is working through others by helping others understand what can be accomplished through dedicated and focused, hard-working volunteers.

Guiding principles for running an effective organization: In my career, servant leadership was talked about quite often. In certain places, it works. In reality, leadership in the volunteer sector is what we’ve been doing all along, where you value the work of others, help them lead themselves, and trust them with appropriate oversite, find those who understand the mission, and press on.

Best way to keep your organization relevant:  Continue learning. The most important thing about a nonprofit is if you stay in yesterday’s news, you’ll end rather quickly. Science has evolved tremendously since the beginning of the Foundation back in 1992, but we can’t stay relevant unless we, as non-scientists, try to learn as best we can to understand the changing science. In order to be relevant, we have to understand all of the new sciences and how they can relate to the current and past sciences to find therapy and change lives. Education on current and future prospects is the most important thing to stay relevant. You can quickly become yesterday’s news.

Why people like working with you:  My personal goal has always been to understand the reality that passion is not enough. Passion without urgency is basically a wish. You’re wishing that something would change. Urgency puts a timeline on anything. People like my passion, but then they also like that we can’t sit down. I can’t sit still and watch the horrors of rare disease take over without standing up with a good solid fight with a plan. The plan again goes back to remaining, staying relevant, with urgency.

Mentor: I have many mentors in life. I would say my father, my grandfathers, my mom, and my siblings. There were five in my family. In my professional life, I had some mentors in my prior career. But in rare disease, the obvious mentors to me are the scientists and those parents who have the courage to not only be a rare disease parent, but to be a rare disease parent and be an advocate, an outspoken urgent advocate. Emil Kakkis [Ultragenyx, EveryLife Foundation for Rare Diseases], obviously. He still is because I’ve never seen anyone with a streamlined focus on treatment. He taught me a long time ago that if you focus on one thing, treatment, everything else will line up. When we met back in the early ‘1990s, it was obvious to me that he was focused on treatment, not just publishing. His success is based on that. I would say without question he was by far the person who has taught me more than anything about rare disease.

On the Job
What inspires you: Other parents, other advocates who are facing more difficult things in their day than our family has had to face, and yet they keep smiling, and they keep going, and moving forward. Those parents who have lost a child and yet they keep fighting. I heard not long ago that you don’t get to choose your legacy. I think that’s true. I think these parents who stand up and fight, not only for their own family, but to change the world for others, have built a legacy that will be lasting forever. Tracy and Jennifer VanHoutan come to mind. I’ve never met anyone like them in my life. They just are absolutely remarkable.

What makes you hopeful: I would say many things. Obviously, new science makes me hopeful. I’ve seen how science can move out of the laboratory, from the bench to bedside. I’ve seen it applied, and I’ve seen it change lives. I think science is moving faster. Having VC money come into rare disease and launch companies, push forward to find therapies, that inspires me.

Best organization decision: To seek and find a young scientist with passion and urgency like Emil Kakkis, and to follow his lead, and stay focused on funding a project until it was picked up by industry.

Hardest lesson learned: It took me too long to learn it, but it’s difficult to understand what raising funds was like back in the old days before the Internet. It was literally going door-to-door to people who had never heard of the disorder, had never heard of rare disease, would never meet another child with the disease your child has, and try to get them to understand the importance of now. It can’t wait until tomorrow. Going back, over and over and over, and finally finding out after weeks, and too much time, that they’re just going to say, “No.” It took me too long to understand that when people say, “No,” it shouldn’t affect you long-term. You should just keep pressing on quickly. It took me too long to learn that. I wasted a lot of time.

Toughest organization decision: Sticking with a project on intrathecal delivery of enzyme replacement therapy. The data is going to take a long time to figure out. We could have stopped funding that a long time ago. I sat behind two scientists, when it was being discussed at a roundtable in a huge room, who were whispering to each other about how stupid the idea of intrathecal deliver was. Nobody’s going to do that. Now fast forward a decade, you see it’s being done in industry now. It’s being done with some success, but it would never have been done anywhere if certain scientists and universities and industry would have said, “Well, nobody’s going to do that.” The difficult decision was stay with a project, even when others say it’s probably not that smart.

Biggest missed opportunity: One of the articles that was published in The Dallas Morning News in Sunday’s front page, a really lengthy article about the MPS trial that was going on. It was published in 1998. There was a large picture of my son on the front page. Next to that was another article with a large picture of a billionaire. I found out later on that he had two grandchildren with the same disorder. I tried to get to him and could never get in. I still can’t get in. But that would have been a game changer for rare disease. That’s a missed opportunity. I think those with deep pockets can truly make huge differences quickly. I keep coming back to urgency. Money can make things move quickly. Lack of money stalls things.

Like best about the job: I like having the opportunity to meet rare disease families, listen to their journey, meet their children, and try to understand what their morning is like, and how their day proceeds, and just see hope in their eyes. It is possible to see that. Even when your child is in such pain, and not envision the dream that you thought, there are still smiles there. That’s what lights the day. It really, really is.

Like least about the job: I never have liked asking people for money. That’s a difficult task. And the obvious thing that stays with you forever when you lose someone you know and love through rare disease when so many people working so hard to keeping it from happening. That would be the worst moments—going to funerals and feeling that pain.  

Pet peeve: I don’t like false passion. I don’t like people who are playing the game, because it is not a game.

First choice for a new career: I always wanted to be a major league umpire.

Personal Taste
Most influential book: I don’t remember its name. It was just a library book on how to start a nonprofit and it had a few chapters on fundraising—just door-to-door stuff. That was a silly little book, but it motivated me to do something.  

Favorite movie: Shawshank Redemption, A Few Good Men, and The Natural.

Favorite music: I’m a classic rock guy, and some R&B and soul

Favorite food: Mexican

Guilty pleasure: I like to play golf.

Favorite way to spend free time: With my wife and son and his girlfriend. Looking back over my life, the best times have been with Ryan and Jeanne.

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