HomeHow Lynn O’Connor Vos and the Muscular Dystrophy Association are helping to...

How Lynn O’Connor Vos and the Muscular Dystrophy Association are helping to raise millions of dollars to fund research to eliminate neuromuscular diseases

I get an early memory from my dad which I say to myself every day — “You can’t park up front unless you drive there.” The bottom line is, nothing ventured, nothing gained. You’ve got to go for it. Urgency is also kind of in my DNA, which is important for MDA right now. As a CEO driving this organization, you need somebody with urgency because every day that goes by that we don’t treat these patients, they lose muscle and we are on the hunt to make a difference for every one of these patients.

I had the pleasure to interview Lynn O’Connor Vos, the President & CEO of the Muscular Dystrophy Association. Lynn brings broad leadership capacity to the Muscular Dystrophy Association. She held her CEO position at greyhealth (ghg) for nearly 23 years and is credited with creating, building and acquiring companies — specifically, nine acquisitions — to grow ghg’s global footprint. While at ghg, Vos led global expansion and diversification strategies and within two years, grew the company from a small, domestic professional player into an award-winning global enterprise with fully integrated, multi-channel offerings. She is a recognized thought leader in the industry with published white papers and articles outlining new, successful approaches to health care technology and communications.

Thank you so much for joining us Lynn! Can you tell us a story briefly about what brought you to this specific career path?

I spent my entire career in healthcare, starting out as a pediatric nurse at Children’s Hospital of Philadelphia. I’ve always been extremely interested in improving patient outcomes and really making a big difference in healthcare and had a dual track in my career. I did a lot of board work at the nonprofit level, including with the Multiple Myeloma Research Foundation, where I helped Kathy Giusti for 10 years. I was also a founding member of the Jed Foundation and there, our mission was to prevent suicide in teens and young adults, so I have had a tremendous nonprofit run from a board perspective.

At the same time, I ran a global healthcare communication firm called greyhealth, which had a focus on the pharmaceutical industry and focused on my interest level, which is entrepreneurialism. I just love to identify opportunities, gaps and new programs; a great example is text4baby which is the largest mobile health program for mothers. Mothers can use the program to track their due date and the progress of their pregnancy. That was a very successful program.

Fast forward to today — the MDA came by as an opportunity. The MDA has been funding over a billion dollars of research and today, we have breakthrough therapies on the market, gene replacement therapy for SMA and many disease modifying therapies in the pipeline. I saw this opportunity as a chance to transform the organization and move them in the direction of driving cures and hopefully eliminating neuromuscular diseases someday through all the research we support.

My job is the perfect combination of care — because I was a nurse — and driving research. Not to mention the fact that you can’t run an organization this size unless you can bring great marketing to bear.

Can you share the most interesting story that happened to you since you began leading your company?

The MDA is privileged to have had a significant number of sponsors who have been with us for decades. I think one of the most interesting stories was with one of our largest partners, the International Association of Fire Fighters. Last year, the first year I was at MDA, was the 100-year anniversary of the IAFF and I had this amazing opportunity to go to their anniversary in Seattle. I have to say I was completely blown away — there was a massive movie and diorama and a gorgeous depiction of what the last 100 years have looked like from the firefighters’ perspective and how many amazing and challenging situations they have addressed, including 9/11. I was absolutely proud and privileged to be in the company of the general president Harold Schaitberger and his entire constituents. So, you join a nonprofit organization expecting to be very engaged in the medical community and fundraisers as well, but at MDA, we are very lucky to have some of the highly respected individuals in America working for us to drive fundraising for children with neuromuscular diseases.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us about the lesson you learned from that?

When I joined MDA, we were at a pivotal point where we had to turn to really focus on driving care and better treatment for patients. There was a lot of transition in certain departments. I can’t say this is a funny mistake, but it’s certainly something every leader knows. My tendency as an individual and leader is, I always get in there and I want to fix things quickly. I think leaders have to adjust to understand the level of change management that might be necessary to actually get to that new place. We probably made the right move, but we probably could have slowed down in certain areas because we all know that change happens slower than that.

Are there three things the community, society and politicians can do to help you address the root of the problem you’re trying to solve?

Our problem is a health problem and because there were no treatments for so long, we weren’t really mobilized to handle that. We can make it easier for people with our diseases to acquire all the treatments and devices they need to live a very successful and productive life. And I think we’re going to be looking at that more closely. We know we are committed to innovations in care. And when you think about care, we’re thinking about that broadly, even with their retail experience. Can we make a better retail experience for these individuals? For example, can we deliver all of the products they need on a timely basis? Can we bring community together so that they get best practices and best ideas of how to live with their disease through digital platforms?

In terms of politicians, society and community, we can have a lot of community engagement — our IAFF and Jiffy Lube partnerships are locally driven (view our MUSCLE UP Campaign with Jiffy Lube here). Our intention is to do much more at the local level to connect and bring best in class services to individuals who have these diseases. And we also are moving in the direction of really understanding how we can create greater access for the drugs that are coming out. That’s something MDA is going to be looking at in the next year or so to actually get those care centers and bring those drugs to patients when they need them.

I also think that one of the most exciting things that definitely relates to the politicians and society is newborn screening. The way newborn screening works in America is you only get screened for four conditions where there are treatments and we’re starting to see that there are treatments now coming to market. And what we’re doing at MDA is mobilizing the entire community along with our chairman, who’s devoted his life to newborn screening, to get newborn screening implemented across America. Those decisions are made federally, and the HHS has approved two of these. The next level is to actually go out and lobby every state and make sure that they adopt this practice. And so, what we need help with is local and national politicians to lobby for us. On the local level, we need to make sure that every baby is screened for these matters. If they’re screened at birth, and they are identified right away, and they get a drug for replacement therapy, for example, or disease modern modifying therapy, they will, in some cases, be cured of the disease. Because every day that they don’t get treated, another motor neuron dies. It’s really urgent to get newborn screening done right away.

How do you define leadership? Can you explain what you mean or give an example?

I think the best leaders are really good listeners and that doesn’t always come naturally with people who have strong leadership traits. It’s something that I certainly work on every day. But a leader’s job is to really set the course to make a bold move, identify where we should be going and then hire incredible people — team members who want to work together. Those are people that complement each other in terms of skills. They shouldn’t be all the same mindset. It should be a diversified team in terms of skills and everything else coming together and really the leader needs to be open to all of their input to meet that bold move.

I would also say that when you’re a leader in a situation where you’re trying to do a transformation, which is what we’re doing, you have to be extremely concerned that you’re reaching high enough. To me, that makes you think if your move is bold enough and rooted in reality. Secondly, you really need to make sure that people have the right skill set to make that bold move. And third, which is where I think a lot of transformations fail, is an exquisitely designed and implemented change management program. A great example of leadership is the CEO of Microsoft. You know when you read his book Refresh, he talks about the pivotal moment in his life when he had a son born with cerebral palsy. But the charter and the mission and the vision to address accessibility and technology in the way that Microsoft is going about it is just really impressive.

What are your five things you wish someone told you when you first started and why? Please share a story or example for each.

I hadn’t really understood the power of MDA’s research and care. This week, I got a call from the CEO from AskBio. He called specifically to tell me that MDA was the only funder out there in the early 2000s right after there had been some setbacks in gene therapy, and he was looking for funding for his research, and we were the one that gave him the funding and convinced them to start. He also articulated very clearly the effect of MDA’s research dollars, the conviction that we had with him and the support we gave them. I wish I had known a little bit earlier on how spectacular the research program that MDA has committed to really is. We all need to understand how important nonprofits can be in transforming disease. And this is what MDA has done. I want more people to know the absolutely critical role MDA has played over the last 70 years in terms of bringing cures to markets. The other story I would say is, you know social impact is obviously so attractive to me and in fact to others. You want to make a big difference. You want to really transform the lives of individuals working with neuromuscular disease in this case. What you don’t really understand when you jump into a job like this is the absolute enormous task of engaging with donors and driving fundraising. We have to fund every single piece of the mission and that is a very big challenge. It’s also an opportunity. But it goes with the territory.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger.

You look at all of the people that fundraised for us over the years — three hundred thousand firefighters, Harley Davidson, Jiffy Lube. We serve 250,000 patients and most of those people come to the MDA website to get information. Fifty thousand of those people go to MDA’s clinics. Thousands of doctors are treating patients. We really believe at this point we need to create a movement. We are driving to bring to market, bring better care to our patients. And we want everyone out there to join us in this movement. And that’s our big challenge going forward and a great opportunity in terms of marketing positioning. We’re taking this brand that was known for Jerry Lewis. We now need to say, “Join us again and help us to help others move again.”

Can you please give us your favorite “Life Lesson Quote?” Can you share how that was relevant to you in your life?

I get an early memory from my dad which I say to myself every day — “You can’t park up front unless you drive there.” The bottom line is, nothing ventured, nothing gained. You’ve got to go for it. Urgency is also kind of in my DNA, which is important for MDA right now. As a CEO driving this organization, you need somebody with urgency because every day that goes by that we don’t treat these patients, they lose muscle and we are on the hunt to make a difference for every one of these patients.

Is there a person in the world or in the U.S. whom you would love to have a private breakfast or lunch with?

The CEO of Microsoft, because I find him to be an inspiring leader. What he’s done at Microsoft is transformative. And the MDA is the right organization to partner with Microsoft because they want to make technology accessible for all. We service 250,000 people who want to work with technology. I think that our MOVR initiative is a great example of connecting all the care for patients that we can so that we can accelerate clinical trials and accelerate treatments to the right patient at the right time. And certainly, Microsoft is in that area of big data and A.I. The other thing that’s really fun and something that we’ve done with Microsoft is that they have the adaptive controller that they launched last year at the Super Bowl. And we’ve done some really great gaming events at MDA Let’s Play. I’d love to talk to him about it because I think what Microsoft is doing is really impacting in a very positive way the children with neuromuscular disease and we just want to do more together. He’s also just an impeccable leader. I’d love to learn from him.

Please visit MDA.org to learn more about MDA.