Female Disruptors: Lynn O’Connor Vos, CEO of The Muscular Dystrophy Association is shaking up how we treat illness

Nothing Ventured, Nothing Gained — My best advice comes from something my dad used to say and I just love it. To me it’s like nothing ventured, noting gained, but a way of describing it in basic terms is my father used to say, “You can’t park up front unless you drive there.”

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Nothing Ventured, Nothing Gained — My best advice comes from something my dad used to say and I just love it. To me it’s like nothing ventured, noting gained, but a way of describing it in basic terms is my father used to say, “You can’t park up front unless you drive there.”

I had the pleasure to interview Lynn O’Connor Vos, the President and CEO of the Muscular Dystrophy Association. Not only does she have a hands-on appreciation for patient care, she brings considerable executive experience and expertise in the fields of pharmacology, medical and clinical education and digital marketing. A ‘healthy disruptor’ known for playing the evangelist, Vos’ seminal speech at the Healthcare Businesswomen’s Association called on her big Pharma clients to face up to eroding trust and rebuild their reputation among consumers. Vos pointed the industry ‘back to basics’ — arguing that communication is the cure for people to make better decisions, adopt positive behaviors, and live healthier lives. She contends that three trends — dramatic technological innovation, the mass consumerization of health, and the growing power of women over the $6.5 trillion health care market — have created a moment ripe for change. The former CEO of ghg | greyhealth group, a growing health communications firm owned by WPP, Vos is an industry veteran widely credited with helping transform the marketing of pharmaceuticals; she is the first woman to develop and run a global health communications enterprise. Vos previously advised top clients to help prepare consumers, especially the women she calls America’s new ‘Chief Health Officers’ to be effective, even revolutionary, healthcare advocates. Together with her team, previous innovations include Text4baby — the country’s top mobile health program.

Thank you so much for doing this with us! What is your “backstory”?

I have an untraditional background that has come full circle. I started out as a nurse, working at Children’s Hospital of Philadelphia, and moved into the world of pharmaceuticals. I spent 20 years of my career at greyhealth group, addressing the evolving trends in healthcare and creating breakthrough campaigns like text4baby, the country’s top mobile health program. I started out in care, and I wanted to get back to care and public health.

Why did you join your company?

When you run an agency, if you’re not reinventing yourself every year, you’re going to be falling behind. Our reputation at greyhealth group was that we were on the cutting edge of creating new initiatives for patients in the pharmaceutical industry. When I joined MDA, I saw this opportunity to revitalize an organization to make a greater impact on the lives of individuals affected by patients with neuromuscular diseases and ALS.

The MDA is an organization that is ripe for disruption. It’s essentially a 68-year-old startup There were no therapies for 65 of those years and now there should be a snowball effect of genetic discovery and new drugs coming to market. We’re uniquely positioning ourselves to join big data, care centers and collaboration to bring better care and more cures to the neuromuscular community.

What is it about the work you’re doing that’s disruptive?

Jerry Lewis put us on the map with the telethon, but at that time there wasn’t much that could be done for families other than provide summer camps, great services and a lot of compassionate support.

Fast forward to three years ago when genetic discoveries began to influence drug development, and pharmaceutical companies began investing in clinical research to bring therapies to market. MDA has had a robust research program for decades through fellowships and supporting the scientific community, and we’re highly recognized for many of the scientific advances in the field. In fact, we are incredibly proud of Dr. Adrian Krainer, whose research we supported. Dr. Krainer just won the highly prestigious Breakthrough Prize in Life Sciences (called the “Oscars of Science”) for his work leading to the development of Spinraza, the first FDA-approved treatment for spinal muscular atrophy (SMA). Spinraza has been revolutionary for patients with SMA, and it’s a real privilege to support research that makes discoveries like this possible.

When I joined MDA one year ago, given our support of the 150 leading care centers for neuromuscular diseases and ALS, we saw the opportunity right away to build a technology platform called MOVR. This technology platform will collect provider data, clinical data, patient data and genetic information on every patient and that data will be shared among all of the care centers in the country. We are now at the intersection of big data, technology and care, and that will drive and expedite better care and more cures for this community.

When you treat rare diseases, every care center has a finite number of patients. The faster we can get care centers to collaborate and share data, the more there will be discovery and better care. The only way to really do that effectively is with technology.

We are an umbrella organization looking after at least 45 diseases in the category of neuromuscular disease. When you add all of that up, the entire market is 250,000 patients. In the United States, that’s actually not a rare disease (200,000 and less is considered a rare disease.) Our impact can be enormous because we are looking at all of these neuromuscular diseases using technology-enabled care to find discovery and better care for the entire population. This is a big category in terms of cost. This is a $45 billion category.

The time is right for disruption. Care needs to improve, and new therapies will be coming to market very quickly. We are focused on building the right programs so that we take advantage of this tipping point.

We all need a little help along the journey — who have been some of your mentors?

My primary mentor is my mom. She raised me to believe that there were no obstacles, there were no barriers. I grew up in a family with all brothers and I was raised to believe I was the leader in the family. Kudos to my mother who really raised me to believe that.

Another one of my big mentors was Alan Gross, who is the founder of Gross Townsend Frank Hoffman, which was a small advertising agency that had very big ambitions that ultimately was acquired by Grey. I joined him and together we started a unique company called Phase Five. Phase Five Communications was right there at the nexus of the cholesterol industry and we did dramatic programs to drive cholesterol awareness and cholesterol treatment. Alan is a great thinker and a wonderful human being.

How are you going to shake things up next?

In year two, it’s about seamless execution and continuing to drive the strategy forward. We’ve invested in our high-impact mission, and now we need to make sure that our cutting edge multichannel fund raising is as outstanding and disruptive as it needs to be. MDA revolutionized fund raising once, with the telethon, and we aim to do that again.

Can you share 3 of the best words of advice you’ve gotten along your journey? Please give a story or example for each.

1. Nothing Ventured, Nothing Gained — My best advice comes from something my dad used to say and I just love it. To me it’s like nothing ventured, noting gained, but a way of describing it in basic terms is my father used to say, “You can’t park up front unless you drive there.”

2. Optimism/ Happiness — I’m just the ultimate optimist. I believe that optimism is the key trait. I think you wake up in the morning and you choose happiness and you choose optimism and you surround yourself with optimistic people because you can accomplish great things with people who think optimistically. For example, I’m a tennis fanatic. The best match at the US Open this summer was the mixed doubles. The winner, Bethanie Mattek-Sands, had had a horrendous knee injury but went on to recover 100% and win. When she was accepting her award, she said the journey was very difficult, but every morning when she wakes up, she said we all have the choice to choose happiness. People who choose happiness and who choose to be exuberant, interested and curious, will achieve higher goals and make a difference.

3. Boundless Energy — The other advice is to have boundless energy. I have a lot of energy. I love to be around people with boundless energy. You notice that energetic people actually produce more. There is a saying that if you need to get something done, look for the person with the most on their plate and they will do it for you. The people whom I know who are the most successful never say no to anything and that’s me too. My husband can’t believe that I don’t need caffeine! When I’m hiring I look for people who are energetic, curious and believe anything is possible.

What’s a book/podcast/talk that’s had a deep impact on your thinking? Share a story with us.

I’m reading “Hit Refresh” by Satya Nadella, the new CEO of Microsoft. The most striking thing in his story is that he was this young, ambitious executive who was climbing the corporate ladder and unexpectedly, his first child was born with cerebral palsy. It was a turning point in his life, and this is reflected in his leadership style and strategic focus at Microsoft today. Microsoft is doing amazing work in adaptive technology to assist people with disabilities. Satya brings sensitivity and compassion to the mission of Microsoft: to “empower every person and every organization on the planet to achieve more.”

Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why?

These are all going to be tennis players! Serena Williams and Roger Federer for sure. I really love tennis. I watch tennis all the time and I play tennis. The thing that’s so remarkable about Roger is he’s been able to play all these years with essentially no injuries and he dances on the court. He’s got such a calm about him that’s refreshing. Serena is unstoppable. She’s remarkable. Serena and Roger are both GOATs (greatest athletes of all time).

How can our readers follow you on social media?


Twitter: https://twitter.com/lynnvos?lang=en

Instagram: https://www.instagram.com/lynn_oconnor_vos/


Twitter: https://twitter.com/MDAorg

Facebook: https://www.facebook.com/MDAOrg/

Instagram: https://www.instagram.com/mdaorg/

YouTube: https://www.youtube.com/mda?reload=9

This was very inspiring. Thank you so much for joining us!

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