The following is a conversation between Lynn O’Connor Vos, President and CEO of the Muscular Dystrophy Association, and Denver Frederick, Host of The Business of Giving on AM 970 The Answer in New York City.
Denver: Saint Patrick’s Day is around the corner, and listeners will have the opportunity to purchase a shamrock at over 20,000 retail locations to help save and improve the lives and families living with muscular dystrophy. And here to discuss that with us… and so much more is Lynn O’Connor Vos, the President and CEO of the Muscular Dystrophy Association. Good evening, Lynn, and welcome to The Business of Giving.
Lynn: Thank you, Denver. It’s a pleasure being here.
Denver: Let me begin by asking you: What is muscular dystrophy? And what do we know about this disease?
Lynn: That’s a great question. Many people don’t know what muscular dystrophy is, and it’s an umbrella phrase. The Muscular Dystrophy Association represents over 43 diseases that are under that umbrella, and essentially we are an association focused on muscle. We’re the world’s leading expert on muscle. The diseases that are under our umbrella include Duchenne, spinal muscular atrophy (SMA), ALS, and many, many other diseases. Most of these diseases have a genetic component, which is why today, it’s really very exciting to be in the muscular dystrophy business and association because we’re finally identifying the genes and the therapies that will actually change these people’s lives.
Denver: How many people are affected by these diseases?
Lynn: That is a really hard question to answer. I haven’t gotten a straight answer on that. But it is a rare disease. Some of these are super rare diseases, and some of them are more commonly known. I think most people understand what ALS is now after the ice bucket challenge, so we’ve heard much more about it.
But in fact, it is a super rare disease as well. Quite frankly, Jerry Lewis put the Muscular Dystrophy Association on the map. He brought children on television where people saw the ravages of these diseases. Many people don’t know people with these conditions because these are rare conditions. When you look at the totality of the diseases, like we do as an umbrella organization, we can impact many, many thousands of people because we are focused on the research broadly, not just specifically on one disease versus another.
Denver: Are these diseases more common among boys than girls?
Lynn: Duchenne, yes. In fact, it’s much more common among boys, but some of the other diseases are equal in their representation.
We refer to our strategy as the four Cs: Cure, Care, Champion, and Community.
Denver: MDA has three major areas of focus: research, caring for kids and adults, and empowering families. Let us briefly run through each of those starting with research. You have taken a big-picture perspective across these neuromuscular diseases that you just said.
What are some of the more promising and hopeful areas of research that you’re currently engaged in?
Lynn: We refer to our strategy as the four Cs: Cure, Care, Champion, and Community.
Let me just start with Cure. We have over the years invested over $1 billion in neuromuscular research. We are the largest funder of research in ALS at $363 million, and we offer grants annually to top researches in the country and globally. In addition to that, we also have representatives at 150 care centers in the United States. So, that’s our Care piece. The fact that we are not just hosting clinics but managing clinics and running community programs distinguishes us as an organization.
So, many organizations focus on research alone. The combination of research and care is really what makes our organization that much stronger. Champion is our advocacy effort, and Community really relates to the absolutely amazing set of sponsors that we have locally throughout the country– the top sponsor being the fire fighters who’ve been working with us for over 50 years– Filling the Boot, Harley Davidson, and you mentioned Shamrocks.
A number of significant grocers around the country, as well as CITGO, are actively working to promote the need for cures and better care for our patients. What we’re talking about right now, which is kind of interesting, is if people work with the MDA, they’re really joining kind of a movement in motion because of the thousands of people that are actually working on our behalf– starting with the firefighters– at 500,000 people.
There are many community events and many individuals and many volunteers who work with us on a regular basis. The last part of Community which I didn’t mention, which is very important, and that is Camp. The MDA supports 4,000 kids every year going to camp. When our children go to camp, it’s a very unique experience because they need one-on-one. With every camper, there is a volunteer. I can’t emphasize enough how important the volunteers have been to MDA and to the families in every community. We probably have one of the largest army of volunteers of any organization who are actively working directly with our kids.
Denver: You’re also very mindful of the family… that a disease like this doesn’t just impact an individual, but really the entire family.
What kind of services and support do you provide for them?
Lynn: Starting with the care centers, we manage and direct clinics. We are this year revamping our whole care center strategy in that we are developing very specific educational modules for families, depending on where they are on their disease journey. We have also developed a registry that will be expanded. In fact, that’s what we’re doing today with IQVIA, which is an outstanding clinical research group. And essentially we are creating a platform at every care center for the providers to collect data and to share best practices and to deliver better services for the people with those conditions.
Our family care specialists live at the care center. They directly communicate with families. This year, in order to get smarter about what families need, we just sponsored a very extensive research with our families. We have over 3,000 families who responded to our survey. We will be delivering very new landmark data in March about the pain points of living with these diseases. We intend to use that data to actually populate our resource center, which now gets 25,000 calls a year. But essentially with the resource center and making that more of a platform, we will be able to service every family in the United States.
The care centers can take you to a certain point. But the reality is with these diseases, many people are not even in the healthcare system. They haven’t had any treatments. I can’t emphasize that enough. The reason why it’s been exciting for me to join this organization… for the first time ever, there are therapies on the market that will either make incremental improvements or actually come close to curing diseases like SMA.
Spinraza was a very exciting drug developed last year, introduced by Biogen. It’s a little complicated in the way that it has to be delivered… which is intrathecal; that’s a spinal injection. But this drug, if you see the results, and you talk to some of the kids and families who have experienced Spinraza, it’s close to miraculous.
Denver: That’s all the headlines I’ve seen about it– miracle drug.
Lynn: There are others coming down the pipe.
Denver: That’s very exciting. You are a big believer in the role of technology and the role that it plays in healthcare.
How do you see it impacting MDA’s work? And how this can help MDA families?
Lynn: Digital health is obviously a passion of mine and something that’s very relevant today in terms of impacting disease– whether it’s diabetes or cancer. Interestingly enough, in neuromuscular disease, there haven’t been as many technological developments. So, we are hosting a big clinical conference in March, and for the first time, we’re actually going to have a salon on technology and a keynote speaker on digital health and the role of technology. I think you’re going to see many more developments there. In ALS, there have been some people that have developed some technology to preserve people’s voices when they lose their voice. So they can use that. There certainly are some apps for ALS as well as for some of our neuromuscular diseases. I think you’re going to see many more companies jumping in here– Google and others– to figure out how we actually mobilize artificial intelligence, as well as technology, to improve the care of some of these patients.
Denver: Very exciting. I mentioned in the opening the MDA Shamrocks Program. Tell us a little bit more about that and how it works and how people can participate.
Lynn: Saint Patrick’s Day is around the corner. Some stores have already started, but essentially, this is a fantastic retail-based program. We’re going to continue to innovate this program. Essentially, we have CITGO and many many grocers: Krogers, Price Chopper, etc. that are asking people at point of purchase to support our cause and purchase a Shamrock and post it. You’re going to see that again, I can’t help myself, given my background is marketing and communication. We’ll be expanding and evolving that program just like we are expanding and evolving the Fill the Boot Program, adding technology to that program, adding technology again and some social media, and advertising to Shamrock. So stay tuned. You’re going to see more advertising in that space. We encourage everybody to get out there and help our kids.
Denver: Well the Shamrock Program has raised $315 million over the past 36 years. Tell us a little bit more about Fill the Boot. Some listeners may not be familiar with that effort.
Lynn: In every firehouse and station around the country, you will see firemen.. firefighters outside sometimes with their kids, sometimes with their families, sometimes with volunteers who go out and request people to fill the boot. They’re out in traffic. When they’re asking you to fill the boot, you’re filling the boot for MDA. They have been with us for I think close to 60 years and the IAFF and the firefighters are actually celebrating their 100-year anniversary next Tuesday, I believe. We will be backing them and supporting them celebrating their commitment to us.
Fill the Boot is grassroots. Every community does it. It’s just amazing. Just a shout out to the firefighters… they’re also instrumental in our Camp Program. When you think about the Shamrock Program, when you think about the Fill the Boot Program, the primary focus has been to develop and expand our Camp Program and our Community Programs. That’s why people are really coming out to fill the boot. Where we are going with our fundraising, I would say, we’re expanding again and moving in an area where initially and back in the days with Jerry Lewis, we could offer camps, we could offer community events, we could offer services, we could offer wheelchairs.
Now, we need to really support some of these massive efforts on the mission side because we are going to be moving into situations where there’ll be many more major therapies on the market. All of our fundraisers… and there’s an army of them out there, are really actively supporting us to offer recreational programs, expand the quality of life offerings that the MDA can provide for families and in addition to that, support our registry, support our research, and support our care strategy.
Denver: One of the more exciting ones, and one that I know you’re thrilled about, is Live Unlimited Campaign. Tell us about that.
Lynn: That’s a fantastic, inspirational line, and it really goes again… what is amazing about the MDA, one of the reasons why I joined. In the older days, many of these kids didn’t live very long. Now you have people living into their 30s and beyond. Why? Because we’ve improved care. We’ve improved the multidisciplinary care. We know how important it is to preserve pulmonary function, lung function, cardiac function. So, this idea of Live Unlimited is really a call out and a recognition that the children with these diseases are living longer, and we should go for it. We should push the limits.
And so when the organization announced that new line and program a few years ago, it’s been amazing, the number of people who’ve come out and done extraordinary things; do-it-yourself fundraising, climbing Mount Kilimanjaro because their dad died of ALS and raising $100,000. It’s a really great line. It really speaks to people.. it also circles back to the fact that we are the world’s leading expert on muscle. When you talk about Live Unlimited, it really calls out to the athletes. So, many many athletes, whether it’s triathlon, or marathons or climbing mountains, are using that as a great opportunity to do-it-yourself fundraising– Go Fund Me’s and bring money back to MDA, which is fantastic.
Denver: It sure is. So many of these young people also believe they are really living their lives to the fullest, and that is fantastic to see.
You came from the private sector, Lynn. You were the global CEO of the Greyhealth Group before taking on this role at MDA.
What are some of the differences that you’ve observed from leading the company to now, a nonprofit organization?
Lynn: I’m really surprised by the fact that I’ve said this since the day I started: Running a global health communications and advertising agency, we have clients. We need to service our clients. We need to delight our clients, and we need to come up with innovative, great ideas that impact health. I come over to the nonprofit side, and I find myself saying that I’m using all my tools in my toolbox. I’m amazed that this is almost a perfect moment for me to join MDA, starting with the fact that drug discovery is at an all-time high with 40 drugs in the pipeline.
My life was spent working on behalf of the pharmaceutical industry and really figuring out the right strategy and introduction in pre-commercialization to get these drugs on the market faster. So, we have an enormous response from the pharmaceutical and biotech industry right now. They want to work with MDA, and we want to work with them because we are in service for our families. We want to make sure these therapies get to our families faster.
The other piece is Care, and I started out as a nurse. And so it speaks to me to go back to care. I love speaking with doctors and being in the company of thought leaders. We have a massive clinical conference that’s happening in March with thought leaders coming into one place. That’s very exciting to me. That’s where I started. I started a company called Phase Five which is in medical education. We need to fill medical education needs right now, and that’s going to be another area we’re going to be working on. If I go over to the commercial side of MDA… which is really exciting…we have the opportunity as many other charities do, to go to corporations that are very interested right now in demonstrating to their millennial population that they are a giving, socially-responsible company. And if we can go to them with the right strategy and the win-win for both organizations, and show them how they can have voluntary opportunities working in our camps, etc., we have an exciting moment.
So, this idea of movement in motion is something we’re taking to corporations. Join us. Really join us in this movement. I’m using my marketing expertise over on the corporate side, the advertising side, and my last point is, there’s something that I hashtag a lot, #communicationisthecure. I really believe, and I have believed for years, that we have plenty of physicians in the marketplace and lots of great drugs; we need to educate people and communicate more clearly about the needs and what they need to do to become healthy.
In my space, the new space, #communicationisthecure is even more relevant because I think many nonprofits don’t communicate very well. You’re going to see us doubling down on communication and really being very clear to the marketplace, every stakeholder, why the MDA is relevant, what we’re doing that’s really significant, and how they can join us to help us reach cures.
What we’re doing at the care center which I’m really excited about is: our team is developing standard protocols for families so that they will get the right information at the right time and what they need to actually manage their disease.
Denver: Wonderful. Lynn, you step into a work culture of a new organization, as you did with MDA, and I’m sure you find much of it to be very good and some other things that could make your life a little bit better.
Tells us about the corporate culture of MDA, where you would like to see it improve… And how does a new CEO go about making those changes?
Lynn: I’m on the hot seat now. Again, I’m relatively new to the space of nonprofit…actually, leading a nonprofit. However, I’ve spent most of life working in nonprofits. I’m a founding board member of the Multiple Myeloma Research Foundation, also a founding board member of the JED Foundation and R Foundation. I’m currently working with them now. Our mission is to improve the emotional health of college students and prevent suicide. What I’m finding in a larger organization like the MDA, and I’ve done my homework… I certainly have a new network of great CEOs to speak with because everyone in the nonprofit organizations are totally open to sharing what they’ve learned and how they can improve their organization.
Our organization, our benefit… we’re very large, but we’re not a federation. If I can use some business language here, we have a single P&L. We don’t have competing factions out there. We do have the need however to galvanize the organization to work as one. So having joined recently, that’s really our key strategy; is to say okay, what is again the mission? How do we communicate that in a very specific way on a regular basis to everyone out there? And how do we galvanize individuals to believe that we’re working as one organization?
Again, my view a few months into the picture; it’s really about leadership. And it’s really about better management. I think many organizations just kept getting larger and really have more – there’s too much latitude out in the field. We’re doing a lot of fantastic things for families, but we need to do fewer things really well. Our strategy is going to be that. You asked earlier what are we doing in the community. We’re going to probably have three or four signature events that we put on every month or several times a year which will be done extremely well, and there’ll be a standardization.
What we’re doing at the care center which I’m really excited about is: our team is developing standard protocols for families so that they will get the right information at the right time and what they need to actually manage their disease. It’s probably more of a centralized approach to some of the communication and some of the tools, and then we will disseminate that back down to the field, and an open dialogue will happen. Next week, for example, we’ve revamped and we’ve created more regional headquarters in the field. Those regional directors are coming in to Chicago. We’re having a really exciting session with them on the new model of fundraising.
What is that corporation? What’s the win-win with the corporation? I have to say that I’ve invited some of my friends from my for- profit world of advertising to come in and really excite people about the new way to bring sponsors in, and a new way to communicate our mission. I think you have heard me say: the mission really is changing dramatically, and many of the people in the field need to understand where we’re going, how to communicate it, how to get people excited about it.
We are offering far more than just recreational programs and camp. We’re offering very big opportunities. In DC, we’re going to be between the registry that we’re building; the idea that we’re going to get collective impact with 150 care centers, the fact that we’re going to have greater access to clinical trials, the fact that clinical trials are being developed differently without a placebo base, etc. These are very big messages for DC. So, you’re going to hear more from the MDA also on the big stage.
Denver: It makes sense if you’re going to sharpen your communications, you might as well begin with your staff.
Lynn: Yes. Makes sense.
Denver: Let me close with this, Lynn. I have a friend who works for MDA, and he told me with tremendous excitement that the potential for this organization over the next five years is just incredible, and I suspect you probably share that sentiment. If I’m somebody suffering from muscular dystrophy, or if I’m one of those families, what are the possibilities that exist five years from now?
Lynn: The possibilities for any new family, particularly any family who may have SMA in their family, one of the things that we’re doing is: we are backing newborn screening. There will be a time in the next year or two where every baby will be screened for SMA, Duchenne and some other conditions. If we find them that early, and you get a drug like Spinraza or perhaps some of the new gene therapies that are coming to the market, you will in fact cure that disease. Those children will start building muscle. So, the earlier you treat, the less muscle loss. So, that’s just dramatic and unbelievable.
Those people who are living with these diseases, the focus is going to be on improving care. When we talk about benchmarking care, and looking at multidisciplinary care, and maybe adding technology to the mix, and some of these incremental therapies… for example kids with Duchenne… unfortunately they have to use steroids from a very early age. A lot of the therapies that people are looking at right now is trying to figure out how we can displace that and not use steroids because steroids actually limit development, etc.
You have many different ways that the research community and the care community are going in and trying to intervene to make this a better experience. In addition to that, there are some miraculous stories of kids out there. We have a guy who I love who is in our resource center, Hugo Het is one of the people living with our diseases. He is in his late 20s. He’s just about to get Spinraza. He has SMA, and he is an amazing human being. We need to tell those stories more broadly – the people that are living with these conditions. I would also say I’m pretty amazed at this moment. Special needs is more recognized out there. You just recently saw Gerber is going to have the Downs Syndrome baby. Many people care and want to do more for our families. We’re going to attract more people to our mission.
Denver: Exciting time for MDA. Well, Lynn O’Connor Vos, the President and CEO of the Muscular Dystrophy Association. Thanks so much for being here this evening.
Tell us about the kind of information someone will find on your website and how people can become involved in supporting your work.
Lynn: Go to our website, and you will hear more about Camps. You’ll hear how to sign up to be a volunteer. Certainly, you’ll be able to find the local place to buy a Shamrock and support us. I would say clearly, keep your eyes open for the firefighters and fill the boot. And watch this year, you’re going to hear more from us– more publications, more announcements, more news about some of the therapies that are coming out. And we would love for you to support us in any way you can, starting with volunteering. There are people who are working for MDA in many many markets…most of the major markets, and our care centers are in 150 locations. You can probably find MDA either at the fire station, in the news; or go to our website.
Denver: Just around the corner. We’ll stay tuned.
Thanks, Lynn. It was a real pleasure to have you on the program.
Lynn: Thank you.
Denver: I’ll be back with more of The Business of Giving right after this.
The Business of Giving can be heard every Sunday evening between 6:00 p.m. and 7:00 p.m. Eastern on AM 970 The Answer in New York and on iHeartRadio. You can follow us @bizofgive on Twitter, @bizofgive on Instagram and at http://www.facebook.com/BusinessOfGiving