Meet MDA’s New President & CEO

A picture of our CEO, Lynn O'Connor Vos

Six questions with Lynn O'Connor Vos

Global health care leader Lynn O’Connor Vos joined the Muscular Dystrophy Association last fall as its new president and CEO. With a clinical nursing background and decades of experience building and leading health companies to drive technology and innovation in patient care, Lynn says her entire career has led to this unprecedented moment with MDA.

Lynn spent the past 23 years as CEO at Greyhealth Group (ghg), a leading health care communications agency where she forged relationships and partnerships with institutions, providers and nonprofits to effect change and make a lasting impact in health care. 

At MDA, Lynn will continue all the great work the organization is known for — like funding new and innovative research; partnering with the nation’s top medical institutions to advance care and drive more clinical trials for MDA families; facilitating knowledge-sharing and best practices for health care experts; and providing day-to-day help and resources for individuals and families living with neuromuscular diseases. She will expand that work by growing relationships with influential partners and helping drive innovation and technology to transform and save more lives. 

Lynn recently sat down to answer questions submitted from Quest readers and families as she takes on this new role.

Why did you choose to come to MDA?

When I learned about the opportunity to lead MDA, it felt like my entire career was coming full circle. I have decades of experience in the commercial and nonprofit sectors transforming health care organizations and driving lasting change, but I started my career as a pediatric nurse. Focusing on patient and family care at MDA feels like returning to my roots.

With tremendous progress underway as an unprecedented number of new therapies and drugs to treat neuromuscular diseases are becoming available, I believe my deep understanding of the drug approval process and the way to work with industry partners, clinicians, researchers and providers will help break new ground in neuromuscular disease research and care. I came to MDA to help improve the lives of more families and transform their health care experience. I’m looking forward to partnering with our community to make that happen.

How do you plan to get to know MDA families?

MDA families are at the heart of what makes this organization so special. I’ve had the distinct fortune of meeting many families already at local and regional MDA events, and my goal is to continue to listen and learn from our families as much as possible. I will be spending time with MDA’s National Community Advisory Committee this year and families at our upcoming conferences and events throughout 2018. I’m also excited to attend several MDA Summer Camps, which I understand are the best week of the year.

In addition to my time with families, MDA just completed a survey of thousands of individuals living with or caring for someone with a neuromuscular disease to better understand needs, gaps in care, challenges and opportunities to pave the way for how MDA can truly facilitate change for our families. I’m looking forward to sharing the findings with you and what it means for new and enhanced programs at MDA later this spring.

After four months on the job, what do you see as the most exciting or promising opportunities for MDA and our community?

My first priority since joining MDA has been to listen, learn and become immersed in all areas and levels of our organization. I’ve spent a lot of time with MDA staff, volunteers, neuromuscular disease experts, industry and corporate partners — and of course, families — to determine where we can make the greatest impact for the MDA community. From day one, I’ve found myself having many “ah-ha” moments about the brightness of our future. We have so many possibilities in new therapies, growing knowledge in genetics, opportunities to apply innovation in care and the ability to bring the same boldness that once paved the way with our telethon to engage and activate our community and sponsors in new ways. 

What is your vision for 2018? What new things can we expect from MDA moving forward? 

I believe the future is about defying limits, just as MDA families do every day. MDA families, disease experts and supporters will be critical in helping us map the road ahead. Progress is our promise, and we are working on a bold plan and critical focus areas to deliver on our mission. My vision is that MDA will continue to be the world leader in muscle research and the pre-eminent provider of resources and support to families. Here are a few things I hope to accomplish in the next year and beyond:

• Expanded relationships with our incredible partners and new partnerships in the biotech and pharma industry that speed better care and new drugs to market

• A better health care experience for families, particularly as millennial moms become the new chief health officers of their families and individuals are needing and expecting a more accessible and integrated health care experience

• Increased access to the best information and resources when and where people need it — we can do much better than we are today

• New technology across all we do for patients, families and health care providers

• Innovative ways to elevate our cause and family stories to motivate a new generation of supporters, just as we disrupted the market with our telethon more than 50 years ago.

We’ve heard you have deep experience and passion in technology. How do you see technology impacting MDA’s work and improving care and support for MDA families?

Technology is going to have a big role in health care and will be the muscle behind MDA going forward. I am a huge champion of using digital strategies to improve public health. I helped create Text4baby, a mobile platform in which informative and health-related texts are regularly sent to expectant and new mothers, which resulted in improved health outcomes for mothers and infants. Those kinds of technologies that help both individuals and health care providers improve the health care experience and outcomes are what I plan to bring to the forefront at MDA.

What’s your favorite thing to do when you’re not working as MDA’s CEO? 

I love tennis and play every week. I enjoy watching the sport and have attended all the majors. In addition, I love to travel and spend time at home with my husband and family.

To connect with MDA President and CEO Lynn O’Connor Vos, follow her on Twitter (@lynnvos), read her regular posts on MDA’s blog Strongly and sign up to receive email from MDA.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA services are only available in the U.S.