Rare Leader: Deborah Marron, Executive Director, Jack McGovern Coats’ Disease Foundation

The Basics
Name: Deborah Marron

Title: Executive director

Organization: Jack McGovern Coats’ Disease Foundation

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Disease focus:  Coats’ Disease is a rare condition found in children and adults where there is abnormal development in the blood vessels behind the retina of the eye. The blood-rich retinal capillaries break open, leaking the serum portion of the blood into the back of the eye. The leakage causes the retina to swell, leading to partial or complete detachment of the retina. Coats’ Disease progresses gradually and affects central vision. It is almost always unilateral (affecting only one eye). If caught early, some level of vision can typically be restored. If not treated until its later stages, complete loss of vision can occur. In the final stage, enucleation (removal of the affected eye) may be necessary. Two thirds of Coats’ patients are children, some as young as four months old. Because it is rarely seen by pediatricians and generalists, diagnosis is sometimes delayed or incorrect and the eye may be unnecessarily removed. There is no cure for Coats’ Disease. It is not hereditary, and no genetic marker has yet been identified. Treatment primarily consists of laser surgery to stop the bleeding.

Headquarters: Burlingame, California

How did you become involved in rare disease: My brother-in-law passed away a few years ago after suffering with ALS for about four years. That was when rare diseases really touched me personally and I became more aware of rare diseases. There’s no cure for ALS and there’s not very much in terms of treatment. I became aware of the Jack McGovern Coats’ Disease Foundation and that it was looking for its first executive director. I learned about the disease, which I had not heard of, and that there was no cure for it. It is a disease that impacts vision, especially the vision of children. About two-thirds of patients are children. I’m an amateur photographer and vision is very important to me. I’ve been lucky to have good vision all my life and it just really struck a chord in me. I am honored to serve the organization and to work with them to find a cure. It’s still devastating to think of people losing their vision over time.

Previous career: I have 17 years of experience in nonprofit management with the Penn State Alumni Association. I am proud of that organization and the great work that they do in support of my alma mater. There was an opportunity for me to retire early from Penn State. I’m not really retirement age, so that gave me a chance to explore other ways to use my nonprofit experience to address a new challenge. That is when I discovered the Jack McGovern Coats’ Disease Foundation.

Education: B.A. and Master’s in education from Penn State and a Doctorate in education from the University of Massachusetts, Amherst.

The Organization
Organization’s mission: Our vision is to find a cure for Coats’ Disease. And our mission is to offer all patients hope and improvements as they wage a lifelong battle against Coats’ Disease and blindness because there is no cure. They have to live with this disease for their entire life. They have to monitor it closely and sometimes it can stabilize, but sometimes it can be stable for some time and then advance again many years later.

Organization’s strategy: We stay focused on that vision and mission and our four goals, which are to build awareness of the disease, raise funds, fund research, and build patient resources. We are the only organization that’s focused on Coats’ Disease. We’re the organization that patients and parents of children who are patients find on the web or through social media and they contact us and rely on us for information, updates on research, and other resources such as a doctor directory. If they are still looking for a diagnosis or want to get a second opinion, they can now use the resource that we’ve created to find a physician near them—a retina specialist who is familiar with Coats’.

Funding strategy: We were formed in 2006. For the first 11 years, we relied on a successful annual golf outing and dinner. That continues. Last year we held our first 5K run. That was successful and we’re going to build on that. We’ve had some success with corporate sponsorships in the past and we are focusing more on other grant funding resources in addition to expanding our outreach on social media.

What’s changing at your organization in the next year: In the next year, we’re looking forward to harnessing the power of our patients, our parents, and other family and community members across the country and organizing them and supporting their efforts in raising awareness within their own communities. We envision a network of volunteers who will be building awareness, holding events, and raising funds in whatever way fits their own personal lifestyle. We are a resource for Coats’ patients around the world. In our next phase, after focusing on the U.S., we will be focusing on our patients and their communities in other countries around the world.

Management Style
Management philosophy: Work hard to attract and engage talented people and support them in working towards our goals and our mission. Always stay focused on achieving our vision.

Guiding principles for running an effective organization: We are a patient advocacy organization. It is important for us to communicate with our stakeholders, stay in tune with what their needs are and listen to their input. We also must stay focused on our goals in order to move closer to finding a cure.

Best way to keep your organization relevant: We are the only organization in the world focused on Coats’ Disease. As long as there is no cure, as long as we can be a resource to patients and their parents, I believe we will stay relevant. I hope someday we will no longer be needed.

Why people like working with you: I am very positive. I am positive that we will meet our goals and I am positive we will find a cure for Coats’ Disease. As we continue to raise awareness, as we continue to get more feedback from researchers in the field, as we raise more funds and create more opportunities, we will achieve that vision of finding a cure.

Mentor: I always go back to my mother. Unfortunately, she passed away about 20 years ago, but I think of her every day. She was a woman who at a young age faced a lot of challenges with the death of my father. She had seven children at the time. She had been a homemaker but went back to school so she could provide for our family. She was a terrific role model in that she was very community service oriented, even though she had seven children. She volunteered with a number of different initiatives and she demonstrated the importance of that community service to our family and I’m proud to say my entire family has lived that life.

On the Job
What inspires you: I have to say our patients and parents. A couple of days ago I had a conversation with a Coats’ mom. Her son was diagnosed at the age of four months with Coats’ Disease and he is now almost ten months old. He is undergoing treatments. She is very committed to helping the Foundation and she is volunteering her time and talent. After the conversation with her I was so energized. And she’s not the only one. She’s only the most recent example. As long as there are patients and parents like that who are dedicated and committed, I will always be inspired by them.

What makes you hopeful: We recently sponsored a keynote speaker who spoke about Coats’ Disease at the Advances in Pediatric Retina course in Utah. We formed a scientific advisory board last year and they recommended that we raise awareness of the Foundation among the pediatric retina community and other retina specialists. In addition to sponsoring the keynote speaker, we raised funds to provide Travel Grants for junior researchers—doctors who are relatively new to the field – to attend the conference and learn more about Coats’ Disease. The response we received from the eight recipients of the travel grants was rewarding. One of them said, “I was trying to figure out what I wanted to focus on and now I know. I want to focus on Coats’ Disease.” That’s exactly what we wanted to hear.

Best organization decision: For the first 11 years of its existence, the organization has been run entirely by volunteers. Two years ago, they made a decision to bring on an executive director. I am their first executive director. They made that decision in order to progress and raise our profile; they needed to bring on someone who could devote more time to the organization. That was a very important decision at that time. Another decision they made before I started was to establish the Jack McGovern Coats’ Disease National Tissue Biobank with the Wilmer Eye Institute at Johns Hopkins Medicine in Baltimore. They donated quite a bit of funding to establish that tissue bank, which will be accessible to researchers around the world who are interested in researching Coats’ and other retinal diseases. I believe that decision will have an incredible impact on advancing Coats’ Disease research.

Hardest lesson learned: It takes time. Research is a long-term commitment.

Toughest organization decision: The toughest decision might also have been deciding to bring in an executive director because it marked a changing point for the organization. It might have been challenging for the founders to take a step back from the day-to-day management of the organization. I believe it was the right decision, and I’m grateful to them that they brought me in because it is tremendously rewarding, but I suspect that was a difficult decision for the organization to make at the time.

Biggest missed opportunity: I cannot think we’ve missed an opportunity yet. We, meaning the board and the founders, have worked tirelessly to uncover opportunities wherever we can. Many years ago, they made the decision to engage the medical community. They had small gatherings, organized by members of the board, with researchers and practitioners. As a result, we’ve had great support from the medical community and the research community.  For example, through those events, the Foundation made a connection with Genentech. Genentech now has been researching Coats’ Disease and we’ve been sponsoring data collection for their research for several years.

Like best about the job: Working with an incredibly dedicated board. They are so committed. And again, the patients and the parents who step forward and say, “Let me help.” They serve and do this as a labor of love. It’s very inspiring to see how hard they work, how much talent, time and treasure they all devote to the organization.

Like least about the job: That research moves so slowly!

Pet peeve: People who forget that we are all one big community and we rely on each other. People’s actions affect other people. We all need to be considerate of each other and take care of each other.

First choice for a new career: National Geographic photographer.

Personal Taste
Most influential book: The Story of My Life by Hellen Keller

Favorite movie: The Princess Bride

Favorite music: I love Celtic music

Favorite food: I like Mediterranean food and anything with crab. My husband makes the best crab cakes!

Guilty pleasure: Dark chocolate

Favorite way to spend free time: Travel, photography, and spending time with my family, friends, and golden retriever.