RARE Daily

Rare Leader: Stephanie Gebel, CEO, The Snow Foundation

October 31, 2019

The Basics
Name: Stephanie Gebel

Title: Chairman/CEO

Organization: The Snow Foundation

Social Media Links:

Headquarters: St. Louis

How did you become involved in rare disease: In 2010, my five-year-old daughter, Raquel, was diagnosed with Wolfram syndrome, a terminal rare disease with no cure and little data. There was not one foundation or association representing this disease. I did not want another person to have to feel what I felt that day when I learned about my daughter’s disease and the lack of support.

Previous career: Office manager for the Los Angeles/St. Louis Rams

Education: Bachelor’s degree in sociology and exercise sports science from the University of Arizona

Organization’s mission: The Snow Foundation is a collective voice for Wolfram syndrome patients, working towards a cure for Wolfram syndrome and developing novel therapies for diabetes, vision loss, hearing loss, and neurodegeneration.

Organization’s strategy: The Snow Foundation has proactively and strategically initiated, managed, and funded research across the globe to accelerate the development of effective treatments that will ultimately lead to a cure for Wolfram syndrome. Despite long odds, the support, involvement, and generosity of our many friends and partners has fueled progress that is virtually unprecedented for a rare disease like Wolfram syndrome. We have invested in research clinics, drug therapies, biomarkers and clinical trials that show promising signs of slowing the progression of this disease.

Funding strategy: It’s hard for people to relate to a rare disease so you have to be creative. We have tried to involve the Wolfram syndrome community and ask them to help fundraise, because their contributions will have a direct impact on the services they receive. We typically do a couple of fundraisers each year as well as annual appeals. Over the last two years we have joined forces with international Wolfram syndrome associations and we pool our money, this way we are able to fund numerous research projects.

What’s changing at your organization in the next year: Creating a global network for patients, families, researchers, doctors, and scientists. There is no centralized network of research or data regarding Wolfram syndrome. Hence, the Snow Foundation’s pillars—accelerate, connect, and mobilize the Wolfram syndrome community—are fundamentally linked to the creation of a global network.

Management Style
Management philosophy: Being able to understand your own strengths and weaknesses and being humble enough to seek advice from others and humble enough to delegate tasks to others who might be more experienced or skilled in those areas.

Guiding principles for running an effective organization: Focus on what we can control. It is important to not get bogged down on things that we cannot control, but to focus on what we can. We can control information sharing, peer-to-peer patient and medical networking platforms and social media. Snow should be able to make it better for people and help patients to live meaningful lives. 

Best way to keep your organization relevant: Bringing together medical leaders, researchers, scientists, patients, families, and resources in order to support Wolfram research. This will help fuel better treatment, management therapies, and hopefully drive science forward for the benefit of all patients living with this insidious disease.

Why do people like working with you: I am a voice for people who would not normally have one. My commitment and passion has not wavered in over seven years. The Wolfram syndrome community knows that I will fight just as hard for their child as I do for mine. When I started this foundation, I knew that we might not find a cure in time for my child, but if another family does not have to go through what I am going through, then this journey is definitely worth it.

Mentor: My 14-year-old daughter, Raquel. I have been witnessing this brilliant, young, energetic child deteriorate in front of my eyes, yet she still makes me laugh and inspires me each and every day. Since Raquel was five years old, she has always said, “There is a reason that I have Wolfram syndrome, me and you mom are going to change the world and get a cure for this disease.” When I have a bad day, I think of what Raquel has to endure daily and my day, well my day doesn’t seem so bad.

On the Job
What inspires you: Wolfram patients inspire me, I feel honored to travel the world and speak on behalf of this organization and give families and patients hope.

What makes you hopeful:  Advancement in research. The fact that most gene therapies under development are aimed at rare diseases, this brings hope to our rare disease community because in many cases no effective treatment exists.

Best organization decision: The best decision was to hire a chief medical officer. Nonprofits are usually started by someone who is trying to make a difference for their loved one (parents or relatives). Parents are inherently bias and scientists have obligations to write grants and publish papers; you need not only an unbiased voice but also someone who can help translate parent and patient’s desires and scientific laboratory discoveries into treatments that are actually clinically useful.

Hardest lesson learned: This disease is personal to me and my child’s life depends on the generosity of others.  I was disheartened when I first started Snow because I had worked with very wealthy individuals, individuals that could have changed the course of this disease with one donation. Unfortunately, they looked the other way, they never even responded to my letters or calls.  I have always been a very giving person, I would give the shirt off my back if it helped others, and I took this extremely personal because this was my child’s life.

Toughest organization decision: Having to terminate Snow’s chief medical officer, who was instrumental in working with the institution that was conducting the first safety clinical trial on a drug therapy for Wolfram syndrome. Snow had just negotiated a deal with our CMO, when the institution conducting the trial informed me that they could only enroll half the Wolfram syndrome patients because of a lack of funding. In order to get all the patients to the trial, I had to terminate my CMO, after he had just quit his job to come work full time with Snow. I found out later that the institution did have the necessary funding but it had been delayed.

Biggest missed opportunity: The ability to build a stronger board in the beginning phase of Snow. I believe that I would have had more adequate resources to advance our mission sooner. Wolfram syndrome is not just rare, it is ultra-rare and I thought that I was bothering people by asking them to help me in the beginning. I also didn’t want people feeling sorry for me that I had a sick child, so I tried to do it all on my own.

Like best about the job: The ability to bring others hope who would not otherwise have any if it weren’t for The Snow Foundation.

Like least about the job: I don’t ever get a break. I live, eat, and breathe Wolfram syndrome. At the end of the day most people leave their office and go home.  When I leave my office (which is in my basement) and turn off Stephanie Gebel CEO, I become Raquel’s mom. I have to witness first-hand what I am desperately fighting to fix.

Pet peeve: Slow drivers

First choice for a new career: Something in the medical field. I would love to be an ER doctor

Personal Taste
Most influential book: I am not a big reader, but anytime I think of an influential book it has always been The Little Engine That Could. I was taught at a young age the value of optimism and hard work.  I have always said that Snow is The Little Engine That Could.

Favorite movie: An Officer and a Gentleman

Favorite music: Alternative rock

Favorite food: Mexican

Guilty pleasure: Old fashions

Favorite way to spend free time: Barbecuing on my deck with my family, listening to my favorite songs, and sipping on a great glass of wine

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