RARE Daily

Rare Leader: Mary McGowan, Executive Director, The Myositis Association

March 26, 2020

The Basics
Name: Mary McGowan

Title: Executive director

Organization: The Myositis Association

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Disease focus: The term “myositis” refers to a general inflammation or swelling of the muscle. Many people have experienced sore muscles after vigorous exercise, a condition that is temporary and improves with rest. Other conditions that can cause muscle weakness and pain include infection, muscle injury from medications, inherited diseases, electrolyte imbalances, and thyroid disease. More often, however, the term myositis is used to refer to a disease involving chronic inflammation of the muscles, often occurring together with other symptoms. This condition is also known as idiopathic inflammatory myopathy (IIM). Inflammatory myopathies are autoimmune diseases, meaning the body’s immune system, which normally fights infections and viruses, is misdirected and begins to attack the body’s own normal, healthy tissue. Inflammatory myopathies are rare diseases. All forms combined affect an estimated 50,000 to 75,000 people in the United States. While it is still unclear what causes myositis, some scientists believe certain individuals have a genetic predisposition to develop an autoimmune disease, which is triggered by an environmental exposure to some trigger, such as infection, virus, toxin, or sunlight.

Headquarters: Alexandria, Virginia

How did you become involved in rare disease: I was approached by a recruiter for this position at the Myositis Association. They asked me if I would be interested. I had worked in nonprofit patient healthcare my whole life, but I had never been in the rare disease space. I thought it would be a wonderful opportunity to go from the leading cause of death of men and women, which is heart disease and the space I was in, to a small rare disease organization that is impacting about 75,000 patients around the nation.

Previous career: I have worked for more than 35 years in nonprofit healthcare management.

Education: B.A. psychology from Trinity University, M.A. in human resources development from The George Washington University

The Organization
Organization’s mission: Our mission is to improve the lives of persons with myositis, fund innovate research and increase myositis awareness and advocacy.

Organization’s strategy: Our governing board works diligently to create the strategic plan three years at a time. We work collectively and come up with the strategy to accomplish the mission of the organization. It calls for increased advocacy, increased research for myositis diseases, increased membership, ensuring that we are trying to reach all 75,000 people throughout the nation living with myositis diseases, and improving clinician education. Being a rare disease, it can be many years before someone gets an accurate diagnosis of myositis. This impacts the overall health and wellbeing of those living with myositis. We work to shorten the time period of accurate diagnoses. One of the ways that we do that is to educate clinicians, who do not necessarily learn about myositis diseases in their medical training.

Funding strategy: We have a multidisciplinary approach working with everything from individual giving, corporate partnerships, working with industry leaders, and events.

What’s changing at your organization in the next year: We have an annual patient conference every year that has more than 500 attendees. The theme this year gets to your question. This year is a new decade, so our theme is “New Decade — imagine The Future.” We’re looking at the future of myositis diseases—everything from what does the future of research look like to where are advanced technologies taking us in terms of better patient outcomes and living better with myositis diseases. We are ensuring that we are leveraging and educating the community as much as we can as we advance into the new decade.

Management Style
Management philosophy: I’m a huge believer in a saying from the book Good to Great that it’s important to get the right people on the bus.  And, making sure that the right people are in the right seat, or right position on the bus.

Guiding principles for running an effective organization: Again, I would say the guiding principles are ensuring that we are getting the right people on the bus and that they have they have access to the right tools and opportunities to develop and thrive in their positions. I am very proud of the team I work with every day.  They are creative, hardworking, and dedicated to the mission of supporting those living with myositis.

Best way to keep your organization relevant: It’s critically important to stay current, to read the latest publications, the latest myositis research, the latest nonprofit management materials.  What’s most important is listening to patients and care partners, keeping patients first, and ensuring that we are responding to their needs and desires, and to what’s top of mind for those living with myositis.

Why do people like working with you:  You’ve got to have a sense of humor in the work that we’re all doing as tough as it is in the rare disease space. A sense of humor is needed to get us through some days that might be tough. Also, allowing the opportunity for growth, and that can be individual growth, but also, keeping at the forefront the vision of ensuring that we are growing universally together as a rare disease community, and working with one another helps raise all boats.

Mentor: I have a mentor who does coaching for nonprofits. He’s a pastor and successful business leader. He’s been a mentor for several years.

On the Job
What inspires you: What always inspires me is working with good, smart people who are trying to accomplish their mission, which is contributing to making the world better for people living with myositis and chronic diseases.  

What makes you hopeful: A better tomorrow is always at the forefront of the work we do at The Myositis Association. We are getting better at responding to patient needs, which provides for a very hopeful future as well.

Best organization decision: Building the right team. You’ve got to build the right team and ensure we are staying focused. That’s a team at every level by the way—staff, governing board, membership advisory board, and even our wonderful leaders who are managing our support groups throughout the nation and the world.  I can’t say enough about the myositis team and community I work with each day.

Hardest lesson learned: I think the hardest lessons learned have revolved around the opportunity to take risks. I’m a huge risk taker. I believe that’s how you grow as an individual and professional. That’s how you learn lessons. You might have a disappointing or painful outcome once in a while, but you learn from those.  This is why you must celebrate the victories that you and your team have to ensure that risk taking is welcomed. It is important to take risks because it is the only way progress is made.

Toughest organization decision: We are huge collaborators. We believe in collaborating with everybody. There are sometimes tough decisions we have to make to put collaboration ahead of competition. It’s a tough decision, but it usually results in the best outcome. On an ongoing basis, fruitful things come of collaborations, even though at the time it may be a tough organizational decision.

Biggest missed opportunity: When we are not keeping the big picture in front of us. Sometimes focusing on the important day to day activities that are taking place, we lose sight of focusing on the bigger picture when we are struggling to get the day-to-day activities done. We always have to keep that big vision ahead of us that will lead to change.

Like best about the job: The people, the community, the patients I get to talk to on a regular basis, our care partners, and our collaborators working together to advance everything we can for the myositis and rare disease community. That’s critically important and that’s what I like best about coming to work every day.

Like least about the job: I feel time pressure in my job. Myositis is a progressive disease and people get worse over time, specifically inclusion body myositis. I wake up with a sense of urgency to make sure that we are doing everything we can with the 1,440 minutes we have every day. We can’t work fast enough for those patients with disease that is advancing. Unfortunately, there is no FDA approved drug for the condition. It’s a constant weight. That is something I like least about the job, but at the same time, it is a big motivator.

Pet peeve: My saying is do your job so I can do my job. If everybody is doing their job then everybody else can do the job that they are supposed to do. When you have jobs that are not being done, then other people have to step in, taking them away from advancing their work, and that can stop progress. I promote accountability for and with each other.

First choice for a new career: Marine biologist – I’m an avid scuba diver and there’s a tremendous need for attention to our oceans and marine life.

Personal Taste
Most influential book: Jesus, CEO: Using Ancient Wisdom for Visionary Leadership by Laurie Beth Jones

Favorite movie: My most recent favorite movie is Togo. It’s a true story. Togo was the lead sled dog in Alaska who helped bring thousands of children a diphtheria antitoxin serum that they desperately needed in the Alaskan town of Nome. Children were dying in Alaska of an epidemic, and because of the extreme weather and snowstorms, there wasn’t a way to get to this village where the critically sick children were. Togo, a leader with passion, drive, and heart, led the sled dog team nearly 700 miles over many days of treacherous conditions to deliver the serum to save thousands of children.

Favorite music: Classic rock

Favorite food: Seafood

Guilty pleasure: Daily ice cream

Favorite way to spend free time: Hiking in nature.


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