Rare Leader: Pamela Mace, Executive Director, Fibromuscular Dysplasia Society of America

The Basics
Name: Pamela Mace

Title: Executive director

Organization: Fibromuscular Dysplasia Society of America (FMDSA)

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Disease focus: Fibromuscular dysplasia (FMD), commonly called FMD, is a disease that causes one or more arteries in the body to have abnormal cell development in the artery wall. As a result, areas of narrowing (called stenosis), aneurysms, or tears (called dissections) may occur. If narrowing or a tear causes a decrease in blood flow through the artery, symptoms may result. Many people with FMD do not have any symptoms or signs on physical examination and are diagnosed by accident during a radiology scan for another problem.

Headquarters: North Olmsted, Ohio

How did you become involved in rare disease: Twenty years ago, I tore three of the four arteries that supply blood flow to my brain and I suffered a small stroke. After my event, I went on to be diagnosed with fibromuscular dysplasia (FMD). Back then there was no organization or resources, and FMD was not recognized as a rare disease. The first case of FMD was diagnosed in 1938 and between that time and my event no one had taken an interest in the disease. As a patient, and a nurse, I never wanted anyone to go through what I did so I set out to do everything in my power to shed light on FMD and build resources. I never dreamt we would be the organization that we are today or that so many patients would be getting diagnosed with FMD.

Previous career: I spent more than two decades working in critical care and as an emergency room nurse. I also worked with developmentally delayed children and worked for several years as the Clinical Director of the emergency department at Lincoln Park Hospital in Chicago. My nursing experience really prepared me for the work that I do at FMDSA and within the rare disease community.

Education: Associate degree in Nursing and currently working towards a Bachelor of Science degree at Eastern Michigan University, in Ypsilanti, Michigan.

The Organization
Organization’s mandate: FMDSA has become the recognized leader of FMD awareness, support, education, and research. We will continue our efforts to support our community and to discover a cause and cure for FMD.

Organization’s strategy: To continue to seek qualified business leaders, sponsors, and researchers so that we can grow our organization, support our patient community, and fund research.

Funding strategy: Ask everyone. Funding has always been a challenge, but our patient community stepped up and they have supported our programs since FMDSA was founded in 2003. We also have a dedicated “Circle of Friends” who donate a minimum of $5,000 annually to keep our patient registry funded, and we are fortunate to have centers throughout the United States sponsor our annual patient meetings.

What’s changing at your organization in the next year: I really hope that in 2021 we can get back to some normalcy in running our organization and have in-person meetings with our patient community and research team.

Management Style
Management philosophy: To involve our patient community as much as possible; they are the heart and soul of this organization. We also believe in supporting and collaborating with other like organizations. By working together, we will all succeed.

Guiding principles for running an effective organization: Being transparent and good communication skills are both essential to our success.

Best way to keep your organization relevant: The best way to stay relevant is by continuing to support our patient and research communities. We have newly diagnosed patients contacting us almost every single day, and the research happening around the world has truly acceded our expectations.

Why people like working with you: I would like to think it’s because I am resourceful, and always willing to help. I have an easy-going personality, and I think that makes me approachable.

Mentor: My husband Bob Kubic has been my greatest mentor from the very beginning of my journey. His guidance and advice have always been solid, and he has helped us to succeed. We would not be where we are today without him. Jean Campbell has also been a great mentor to me. Jean has worked in the rare disease community for decades and has so much experience and knowledge. Whenever I have question or a difficult situation, she is always there to offer guidance and support me.

On the Job
What inspires you: The FMD community, and the rare disease community as a whole, inspires me and keeps me passionate about what I am doing. The rare disease journey is a difficult one and I so wish I had had support when I was diagnosed 20 years ago.

What makes you hopeful: Advances in research make me very hopeful. Not just for FMDSA, but for all rare disease. We are all so grateful for Global Genes, and the resources and education that you offer to make us better advocates and leaders.

Best organization decision: Hiring staff even though there are only two of us. Volunteers do not always come through for multiple reasons, and by having staff we are more effective and efficient in reaching our goals and providing resources to our community.

Hardest lesson learned: It is difficult to not be able to help everyone, and so disappointing when you have people with the ability to help, but they have no interest in getting involved.

Toughest organization decision:  Not being able to fund research projects that we have been asked to.

Biggest missed opportunity: Securing large grants to further our research and mission.

Like best about the job: I love working with people and being able to make a difference in their life. I’ve had the opportunity to meet patients and researchers from all over the world, and I am inspired by all of them. I feel very honored to be in this position and have the opportunities that I have had over the years. I’ve met some amazing people.

Like least about the job: There always seems to be a lack of resources and funding. This is by far the most difficult job I have ever had.

Pet peeve: When patients are dismissed by their medical team, and not taken seriously.

First choice for a new career: I would work with children.

Personal Taste
Most influential book: I honestly do not have the time to read a lot, but one book that I really enjoyed reading was Conversations with God: An Uncommon Dialogue by Neale Donald Walsch.

Favorite movie: Holiday Inn with Bing Crosby and Fred Astaire. I watch it every Christmas.

Favorite music: I love all kinds of music, but my favorite has to be country music.

Favorite food: Any kind of fish

Guilty pleasure: Godiva chocolate

Favorite way to spend free time: Spending time with family and friends. We enjoy being on the water, boating, and deep sea fishing.