2019 Muscular Dystrophy Association Conference

President and CEO of the Muscular Dystrophy Association (MDA), Lynn O’Connor Vos, discusses the work that the organization is doing to fund research for neuromuscular diseases. MDA is the largest source of funding for neuromuscular disease research outside the federal government and has committed more than $1 billion in funding since its inception. Click here to find out more about the MDA Conference.

Lynn Vos is the President and CEO of the Muscular Dystrophy Association (MDA), dedicated to transforming the lives of people affected by muscular dystrophy, ALS and related neuromuscular disease. She is focused on asserting MDA’s leadership in research and care and establishing MDA as the preeminent advocate and provider of services to families affected by neuromuscular disease. Lynn is leading MDA in the development of a comprehensive data hub, MOVR, which will drive the advancement of research, new technologies and care strategies and galvanize both the industry and research arenas to pioneer better care and more cures.  Prior to her arrival at MDA, Lynn was the CEO of ghg | greyhealth group for nearly 23 years. 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. Lynn has public and private board experience, including OptimizeRx (OTC: OPRX) and the board of The Jed Foundation, a leading mental health nonprofit. She was named Woman of the Year by the Healthcare Business Women’s Association in 2005, was nominated by the YWCA to the Academy of Women Achievers in 1999 and received the Corporate Achievement Award from The Jed Foundation in 2006. In addition to the numerous awards Lynn has won over the years, in 2017 she was named an MM&M Healthcare Transformer and a member of the PharmaVOICE 100; in 2016, a PM360 Elite Transformational Leader and an MM&M Top 50 Health Influencer. This year she was named a PharmaVOICE Red Jacket honoree.


Neal Howard: Hello and welcome to the program. I’m your host Neal Howard here on Health Professional Radio. MDA or the Muscular Dystrophy Association is the largest source of funding for neuromuscular disease research outside of the federal government here in the United States, committed more than a billion dollars in funding since their inception. Joining us on the program is the President and CEO Lynn O’Connor Vos. Welcome to the program, thank you for joining us.

Lynn O’Connor Vos: Thank you Neal, my pleasure.

Neal: Well you’re going to talk to us today about the work that the MDA does – doing funding research for neuromuscular diseases. What is it that you do other than the obvious?

Lynn: Sure. Muscular dystrophy association as you probably know is put on the map by Jerry Lewis over and we’ve been around for about 68 years. We are a complex and very innovative organization, at the root of our world is research and over the last 68 years we’ve invested over a billion dollars in research in our muscular medicine. We represent 43 different diseases in the category and we also have 150 care centers or clinics around the country delivering care to over a hundred thousand patients with these conditions. And then last but not least, and certainly one of the most exciting and wonderful things that the MDA is always done is we have a camp program every summer where over close to 5,000 children go to camp and that’s an opportunity to really develop great independent life skills so the MDA is changing rapidly right now based on what is really cutting-edge science. We’re finally discovering the genes that cause some of the primary diseases here and the biotech industry and pharma industry and many researchers are lining up to identify gene replacement therapy and gene therapy to not just improve outcomes but potentially cure some of these diseases.

Neal: When you mentioned the connection of course with Jerry Lewis, I mean the Muscular Dystrophy Association has celebrity status but that celebrity status as you pointed out really is secondary to the things that a lot of people have no idea that is going on behind the telethons, behind the radio thoughts, behind the ads, as well as how you’re combining the scientific and clinical conferences this year.

Lynn: Sure. So I joined the Muscular Dystrophy Association just a year and a half and my background is I was in pharmaceutical marketing and communications in healthcare and when I joined, it became very clear that you’re right, this organization was known for servicing patients and supporting them in any way possible and for all those years with the telethon, there really wasn’t anything to offer patients. And now, you are really hitting a moment in time where there’s three drugs on the market, there will be up to seven or eight in the near future and again when you think about any other healthcare area with 43 different diseases and 250,000 people in the United States affected by these diseases, it’s kind of shocking how few drugs are on the market. So it really is a turning point and one of the most exciting times I think in any disease category where you’re going to see almost an avalanche of activity and hopefully some wonderful new treatments that will change people’s lives. And because we’re on TV and this is before I joined but certainly everybody knows the telethon, the brand image was really very much service and loving care and empathy and I think we are really moving pretty rapidly to an opportunity to talk about innovations in science and innovations in care. So our mission now is we’re committed to transforming the lives of individuals with neuromuscular disease and that includes muscular dystrophy and ALS and we do that through innovations in science and innovations in care. And the conference is really just to bring that whole idea to life so in the past there was always a research conference and it became very obvious… we had a kind of a record of attendance last year. The intersection of research and clinical care are becoming closer and closer and in fact in this kind of rare disease space between research and care in clinical care because really almost every patient given the fact that there’s so much clinical research going on out there will be introduced to some sort of research out there. So the conference is very exciting, it’s coming up in April, in Monday April 15th is our opening and it ends on the 17th. It’s spectacular,  everyone’s attending really in the industry which is incredible, we have over 1,200 people scheduled to be there and the opening of which is on Monday morning, we’re really proud to have Janet Woodcock there to kind of set the stage. She’s extremely eager to talk about rare disease, talk about the drug development, talk about ways that the FDA can support the introduction of appropriate care for patients with neuromuscular disease. And followed by, that there will be an FDA panel including Peter Marks from the Center for Biologics so we are really happy to report that this will probably be the first time a conference like this opens with some significant speakers from the FDA as well as of course we have the thought leaders from the community and it will end that morning which I think will be very powerful with a wonderful patient voice seminar with five of our key ambassadors – children and young adults and adults – who are living with neuromuscular disease and we’re really going to give the audience an opportunity to hear firsthand how some of these individuals who are currently receiving some of the products that are out there are developing kind of life-changing events are happening for them with their disease and they’re able to do so much more than they used to prior to drugs like SPINRAZA.

Neal: It seems that it makes perfect sense to combine the research sector and the clinical sector. Do you think that this is a model that’s going to be adopted in other areas of research having been first adopted by the MDA, such a huge and influential organization adopting such a model for conferences? Do you think on the cancer scale, on the HIV scale that maybe researchers and clinicians will get together and accelerate the progress?

Lynn: Yeah, absolutely. I did also mention that we have over 200 abstracts which is about twice as many abstracts as last year so this is a category were many, many more researchers are coming in and that’s not just basic academic research but all the way through clinical research. And for the first time, we have a convention area where we have many pharmaceutical companies and technology companies actually exhibiting. So the intersection of care and research in this category is critical, I think it’s also probably true in some of the other big organizations like ASCO or you do have a combination happening there. What we really see here is it’s the first time where this category is getting big enough and important enough that you need to have a solid convention. We need to have everyone there in one room, as I mentioned this affects 250,000 people. It’s also a category that costs the United States forty six billion dollars and so there’s just so many hot topics that need to be covered – gene replacement therapy, genetic discovery, newborn screening – for the first time you’re going to see because there are therapies on the market. The government has now approved newborn screening for SMA for example and so when you start to think about newborn screening, we’re going to have so many more babies identified early and if you have therapies available for them at the same time, we really have a big shot at curing some of these diseases like SMA. So you’re right on this conference, I think this is where the world is going to be going particularly when with again,  years of no therapy. Most patients that have these conditions will be candidates for some research and the intersection of clinical care and research kind of inextricably linked when you have a category like this.

Neal: Well thanks for coming in. Where can we go online and learn more?

Lynn:  mda.org, please come to our site. You’ll see all kinds of information there about our diseases and also all kinds of activities that are happening around the country to drive funds for our programs.

Neal: It’s been a pleasure speaking with you this morning.

Lynn: Thank you.  

Neal: You’ve been listening the Health Professional Radio, I’m your host Neal Howard. Transcripts and audio of this program are available at hpr.fm and healthprofessionalradio.com.au

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