Rare Leader: Michael L. Weamer, President and CEO of The Marfan Foundation

The Basics
Name: Michael L. Weamer

Title: President & CEO

Organization: The Marfan Foundation

Disease focus:  Marfan syndrome and related disorders.

Headquarters: Virtual organization with a headquarters in Port Washington, New York. 

How did you become involved in rare disease:  I was fortunate enough to be introduced to Karen Murray, a courageous Marfan mom, in 1999. The rest is history. Karen is our current Board Chair and an extraordinary mother, corporate CEO, and volunteer leader. 

Previous career: Executive vice president of the American Heart Association.  I spent 25 years with the organization.  Education: Bachelor’s degree in community development from The Pennsylvania State University.

The Organization
Organization’s mandate: To create a brighter future for everyone affected by Marfan syndrome and related disorders.

Organization’s strategy: Our strategy focuses on pursuing the most innovative research and making sure that it receives proper funding; creating an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment; and providing relentless support to families, caregivers, and healthcare providers.

Funding strategy: We depend on a traditional mix of funding opportunities. In the last several years, we have dramatically expanded our special events and are enjoying success with our Walk for Victory program as well as gala type events in communities where we have strong volunteer leaders and commitment. Corporate support is steadily growing. And, we are building a Major Gifts program and launching a $1 million campaign. 

What’s changing at your organization in the next year: We’re launching a patient registry and conducting a capital campaign to fund annual conference scholarships. We’ve also expanded our focus on quality of life for individuals with Marfan syndrome and related disorders. Our patient registry will provide a state-of-the-art patient portal for individuals with Marfan syndrome to store their medical records and health information and provide an opportunity for expanded patient research. Our capital campaign will result in $1 million to fund annual conference scholarships for members of our community. Quality of life programming is absolutely critical as our community members are living, longer, fuller lives and depend upon the foundation for support.

Management Style: I am a coach not a supervisor.  No one works for me. We work together.  Staff members, for the most part, come to me for collaboration not direction. We have no real bench strength, given our size, so we do our best to recruit all stars and focus on driving success every day.

Management philosophy: I hire staff who are equally or more talented in their specific areas of responsibility and depend upon them to act independently, while coming together as a team to make global organizational decisions. I also stress that this is a “volunteer organization” and we are their stewards in carrying out the mission of The Marfan Foundation. To be successful at The Marfan Foundation, you must be a great volunteer/staff partner. Finally, the volunteer/staff role is more blended in a rare disease organization. Trust and confidence are very important to the partnership. 

Guiding principles for running an effective organization: When I think about guiding principles, I think of five key areas:

• Leading with Mission
• Measuring Impact
• Total Transparency
• Donor Accountability
• Financial Stewardship

We also do our best to create a staff environment that is comparable to larger organizations, try to differentiate ourselves with small life enhancement perks, and we are totally focused on the value each member of our team brings to accomplishing our mission.

Best way to keep your organization relevant: Constantly reinventing ourselves. Considering new opportunities. Being nimble. Avoiding bureaucracy. 

Why people like working for you: Because they work with me versus for me and we have built a great virtual team of high quality professionals who are committed to the Marfan and related disorders community.  We also have an extraordinary volunteer/staff partnership which is critical to success in a rare disease organization. 

Mentor: John Garrison, former CEO of the National Easter Seal Society and American Lung Association.  In addition to significant early professional guidance, John recommended me as a candidate for the CEO role of Prevent Blindness when I was a young executive, and it was a wonderful career boost. We are still dear friends today, some three decades later.

On the Job
What inspires you: Our community. We have the most engaged, supportive, hopeful, and informed community I have ever met.  This is coupled with an extraordinary Professional Advisory Board of leading medical professionals which spends countless hours with members of our community.   

What makes you hopeful:  Advances in research and treatment for individuals with Marfan syndrome and related disorders. Community members living longer, fuller lives.

Best organization decision: Deciding to become a virtual organization some three years ago.  We have been able to hire very talented staff looking for a more flexible work environment and expanded our geographic footprint as a result—a great win.

Hardest lesson learned: While not the hardest lesson learned, it is important for rare disease organizational leaders to recognize the “intense” relationship volunteer leaders have to rare disease organizations versus the larger sector.  It is a great strength but can from time to time impact organizational direction.  Properly understood and managed, it can be a great organizational strength. 

Toughest organization decision: Balancing countless worthy priorities with limited financial capacity.  You need to be relentless in considering impact and ROI in each and every decision.

Biggest missed opportunity:   We didn’t create the Ice Bucket Challenge!

Like best about the job:   I love every aspect of serving as the President & CEO of The Marfan Foundation.  It is a gift to serve in this role.  I am surrounded by some of the most talented and dedicated volunteers and staff in the sector. 

Like least about the job:  I hate to be unnecessarily distracted from focusing on organizational priorities.

Pet peeve:  People with all of the answers and none of the effort. 

First choice for a new career:  Broadcasting – started out as a radio announcer.  Would be fun to return at some point.

Personal Taste
Most influential book:  The Essential Drucker by Peter Drucker.  I had an opportunity to moderate two not for profit management sessions with Peter Drucker.  Extraordinary.  For casual reading Everything by Pete Hamill. We share a great love of New York City. Here is New York by E.B. White is a great read if you have never enjoyed it. 

Favorite movie:  Probably White Christmas with the music of Irving Berlin.  Saw it for the first time this holiday season.  Priceless!

Favorite music: Chicago or Earth, Wind & Fire.  James Taylor & Carol King close behind. 

Favorite food: Probably pasta and white clam sauce.

Guilty pleasure:  Probably Dairy Queen – great childhood memories.

Favorite way to spend free time: Boating on the Long Island Sound from the Connecticut River to Nantucket and everywhere in between.