Editor’s note: Since this interview, Ginger Spitzer has changed roles from the Foundation for Sacroidosis Researcher to take a position at another foundation. She said she believes that the continued strong work of FSR and other disease advocacy organizations drive critical advances in disease research by disrupting traditional model of research and drug development.

The Basics
Name: Virginia “Ginger” Spitzer

Title: Past executive director

Organization: Foundation for Sarcoidosis Research

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Disease focus: Sarcoidosis is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90 percent of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. Disease presentation and severity varies widely among patients. In some cases, the disease goes away on its own. In others, the disease may not progress clinically, but individuals will still suffer from some symptoms that challenge their quality of life. The rest of patients—up to a third of people diagnosed with the disease—will require long-term treatment. Sarcoidosis is considered chronic in people whose disease remains active for more than two-to-five years; in this population sarcoidosis can be debilitating and life-threatening.

Headquarters: Chicago

How did you become involved in rare disease: I became involved when my husband was diagnosed with sarcoidosis. I started looking into the foundation and saw they were looking for an executive director. Although I have recently left the role, over the past seven years we have accomplished a massive amount of work that benefits patients.

Previous career: I was always in nonprofits. I taught English literature in college and saw inequities among students coming into college and I became involved in education of youth, youth leadership, and the development of young people. I also directed an equine assisted therapy center at one time that provided service to children with special needs.

Education: B.A. in English and a Master’s in English literature from Northern Illinois University. I am also pursuing a Ph.D.

The Organization
Organization’s mission: Our mission is to advance research toward improved therapies and a cure, as well as educating patients so they can better navigate their disease.

Organization’s strategy: We have a dual strategy to fully integrate the patients into every aspect of research. It’s slightly disruptive as the traditional pathway is that the investigators and even clinicians and pharma all work on their research with very little patient-reported input. A big part of our mission is to make sure there is a much friendlier ecosystem and a more communicative ecosystem between the scientific community and the patient community. Some organizations solely focus on patient resourcing and patient education, or they solely focus on research. We do both by combining the two. We can’t do research without the patients and we can’t do patient services without the research.

Funding strategy: Our funding strategy is to try to be as diverse as possible, so we don’t rely on one funder or funding stream. We do have our traditional philanthropy, including events and appeals. We also partner with industry and entice them into the space and work with them once they focus on sarcoidosis.

What’s changing at your organization in the next year: Next year marks our 20th anniversary. We’ll be launching our ten-year strategic vision, a very strategic plan identifying how to fill the gaps in this disease space, so those with deeper pockets can take over. We’re not trying to do everything, but to be the connector so industry and others can do more. Our strategy is to invest where we can to provide a strong pipeline into the next phase of support.

Management Style
Management philosophy: My management philosophy is around a mentor approach. There’s not one layer of staff that makes all of the decisions. We work to integrate everyone’s ideas and that has served us well. We now have budget exceeding $4 million, but still have a very inclusive approach. The bigger you get, the more difficult it is to do that.

Guiding principles for running an effective organization: Stay on mission. Say “no” even if it’s painful to say “no” when it’s not in line with your mission, but don’t be afraid to embrace things you haven’t done. There are so many incredible needs out there. Sometimes it’s hard to say “no.” If it’s not within your mission, you risk derailing the rest of what you have done because you are cannibalizing the resources for something else. When considering an opportunity, you need to filter that through your mission lens and ask how would that project add or detract from the mission?

Best way to keep your organization relevant: Always be aware of what is happening out in the space. You can become insulated in your organization if you don’t look up and see how things may have changed. You need to be flexible and pivot.

Why do people like working with you: We are passionate about what we do and are connected to patients. I think they feel that sense of connection with us and like that we collaborate with many stakeholders. We have also always found ways to deliver what is needed and push the needle forward. I think many of our collaborators appreciate that.

Mentor: My mentors have been past executive directors who had a leadership style of mentoring and shared ideas and values. There have been a number of them. My mentors have also been patients, who in the last few years have been able to consistently remind me why this work is critical.

On the Job
What inspires you: The patients inspire me and being able to know that even if it is not in the next few years, FSR’s work will change patients’ lives at some point. FSR is changing the world by changing science, and is changing science by being disruptive to the traditional scientific field.

What makes you hopeful: It’s a dual-edged sword. What makes me hopeful as well as feel a little challenged, is that sarcoidosis is a wide-open field. There is a lot of opportunity to move forward, but that’s also a challenge as the work must move ahead without letting up on the critical aspect.

Best organization decision: To become extremely strategic. FSR has very specific projects, both completed and ready to move forward in the next number of years, and following the strategic plan has been the best decision.

Hardest lesson learned: Maintaining the patience around unavoidable long timelines and delays that happen in clinical trials or having a funding stream come through. Science moves slowly.

Toughest organization decision: Saying “no” to a few opportunities. For example, we were helping do outreach for a phase 2 trial. There were some great patients who met the protocol, but they didn’t have the funding to travel to the trial site and there wasn’t enough supportive funding from the pharma company. We grappled with whether this is something we should do. We determined it wasn’t for a number of reasons. That was one example, but none of those decisions were easy.

Biggest missed opportunity: Being able to do as much as we wanted to do for a project because we just didn’t have the staff. I was inclined to do it anyway, but once we realized we didn’t have the staff, doing it would just be hurting ourselves. We don’t want lack of staffing to ever be a reason for not doing something, but it’s a real issue at times. Funders want to pay for projects, and don’t necessarily want to pay for people.

Like best about the job: It’s something different all the time. FSR has a lot going on in a lot of different areas at any given time.  It has been stressful, but exciting. It’s the good kind of stress.

Like least about the job: The slow nature of science.

Pet peeve: When people say, “This is how we have always done it” as a reason why we are going to do something a specific way. That drives me crazy. It may be a good reason, but if the circumstances have changed, so should the approach.

First choice for a new career: I’m very much an animal person. If I had endless amounts of money, I’d get a rescue or rehabilitation center for animals and combine it with therapeutic human interaction.

Personal Taste
Most influential book: The Giving Tree by Shel Silverstein.

Favorite movie: Pulp Fiction

Favorite music: Classical hip-hop and The Beatles

Favorite food: Any sort of fruit

Guilty pleasure: Spending time reading books

Favorite way to spend free time: With my ten-year-old daughter

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