Rare Leader: Susan Ruediger, Co-Founder and CEO CMT Research Foundation
October 15, 2020
Name: Susan Ruediger
Title: Co-founder and CEO
Organization: CMT Research Foundation
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Disease focus: Charcot-Marie-Tooth (CMT) is a genetic nerve disease with more than 100 known genetic causes. Onset can be at birth or later in life and is characterized by degeneration of motor nerves and loss of sensation in the feet, hands, legs and arms. CMT is a progressive disease that can lead to severe disability or even death.
Headquarters: Atlanta, GA
How did you become involved in rare disease: I have CMT and come from a family with six generations of CMT. Our quest is both personal and professional in that I have been working to end CMT for more than a decade.
Previous career: Sales management and training
Education: BA from Clemson University
Organization’s mandate: To deliver treatments and cures for CMT in our lifetime.
Organization’s strategy: The CMT Research Foundation funds academic and industry partners who are seeking to develop treatments and cures for CMT. With a focus on translational science, we prioritize those projects that address key barriers to drug development for CMT. One thing that makes us different is that we bring new people and organizations to the CMT field. We seek partnerships with companies that have technologies that are relevant, but not deployed, for CMT. We bring disease expertise, and they bring their technology. CMT is a new disease for study in four of the eight projects we’ve funded in our first 24 months.
Funding strategy: We raise money by attracting the people who care about having treatments for CMT and building a strong case for support. In our first 24 months, we’ve raised over $4.2M from the CMT patient community and their friends and families. Every project we’ve funded includes a revenue share so that if the project wins, we win too. Our goal is to one day be completely self-funded.
What’s changing at your organization in the next year: Jump starting CMT drug development is why we exist, and change is always part of the process. In our first two years, a few key donors invested early in our model and with that funding we were able to establish the business, launch eight projects in the first 24 months and build a robust team that includes a board of directors and a scientific advisory board. Our third year has been all about growth. We’ve built a staff of five now and we have added two key senior executives—Erich Fasnacht as chief operating officer and Keith Fargo as chief scientific officer. The donor base has grown 375 percent in the past two years. Our revenues are 48 percent higher over this time last year, an extraordinary feat in the time of COVID. Our investment in grants has been strong since our inception and we’ve now funded more than $2.2 million in research projects, adding half of that this year alone.
Management philosophy: I surround myself with people who are exceptional in their roles and then let them do their work. At the CMT Research Foundation, we are the only dedicated CMT patient organization with a full-time scientific officer on staff. Our COO is a veteran in research for non-profits who applies his MBA education and experience to the Foundation. The two other employees are experts in their fields of communications and operations. But above all, they are the hardest working and the kindest people I’ve met. I feel grateful for their involvement.
Guiding principles for running an effective organization: Have a single focus. Building the mission with one focus has been our strength. The entire team of staff and volunteers are focused only on that mission. We don’t get distracted by initiatives that don’t lead to drug development for CMT. And then hire the right people and let them do their jobs well, focused on a singular goal. We clearly communicate with the community about our mission, our work, how investments have been deployed, and realistic expectations for clinical trials and approvals.
Best way to keep your organization relevant: We are always going to be relevant as long as CMT exists in the world. CMT affects 2.8 million people around the world and there are no treatments. 1 in 2,500 Americans are reported to have CMT, but we think the numbers are far higher. Even among our board of directors whose kids have CMT, a correct diagnosis takes an average of more than 11 years. Additionally, there are more than 100 genes known to cause CMT, so it will take more than one drug to impact everyone with CMT. As long as there are people suffering from CMT and we stay focused on delivering treatments and cures, we will be relevant.
Why people like working with you: My co-workers tell me that they like my singular focus—a relentless pursuit for treatments and cures. As a patient, I keep the conversation focused on how any successful initiative ultimately benefits patients. Lastly, I trust the team to be excellent at their jobs. We are all pulling in the same direction. This is the best team I’ve ever worked with.
Mentor: I have several people who influence my role as CEO. My partner and co-founder Pat Livney. He’s been in this role before and understands how to be effective as a patient advocate and business leader. I also have a few friends in non-profit and business leadership who I call on when I’m stumped. Lastly, my father, who worked at the same company for 40 years, taught me to lead with praise, compassion, and kindness. These elements make him a great dad too.
On the Job
What inspires you: I’m inspired by the people who have CMT and suffer every day, especially the kids. I remember what it was like to experience my first falls, my first cuts from sports teams, my first ridicules on the playground. Those experiences have long term impacts that can’t be easily measured. I’d like to have a world where no kids have to worry about CMT.
What makes you hopeful: Meeting with the researchers who are working in CMT makes me hopeful. I feel their personal commitment to ending my disease. I see their innovation, work ethic, and drive. I also have the good fortune of hearing research updates from our partners and the CMT scientific community regularly. There is amazing work happening in CMT and treatments will be delivered in this decade. That is very encouraging.
Best organization decision: Hiring a full-time CSO. With our single focus on research, we can get the most promising research funded faster than anyone else.
Hardest lesson learned: While some would argue this is the most promising time in history for CMT—we’re making more progress than ever before, but it is frustrating not to be able to cure this thing overnight. I’ve been working in CMT drug development for over a decade, so I thoroughly understand the drug discovery process and its historically low success rate. As patients, we get so excited by a breakthrough then, if and when it ultimately stops or fails, we’re so disappointed. How do I keep everyone’s spirits up amidst the failures? The hardest part of my job is to balance the optimism with the reality of failures.
Toughest organization decision: I’m a natural caretaker. My instinct is to help whoever calls me. At the CMT Research Foundation, we have one single focus—develop treatments and cures for CMT. With that one mission, we can’t be all things to all people with CMT. There are good organizations out there that provide exceptional patient resources and I always refer callers looking for support with leg braces or support groups to the other organizations. While it’s hard for me to say, “I can’t help you,” our laser focus on disease modifying research is the best use of our time and money.
Biggest missed opportunity: Not growing the board aggressively early on. We started with six strong board members and now we’re expanding. We’ve added one great member and have a few more in our pipeline. We know there are others who have the interest in CMT and influence to drive research forward faster. We haven’t found them yet, but I’m not giving up.
Like best about the job: Life is all about people and the people I work with are some of the best I’ve ever met—patients, scientists, co-workers, volunteers—we’re all pulling in the same direction and I am truly inspired daily by their dedication.
Like least about the job: Having to say “no.” It is my job to turn down research we think is not the most promising (but perhaps might turn into that winning shot on goal). I also hate saying no when patients ask if we are close to a significant breakthrough.
Pet peeve: Multi-tasking. Everyone is trying to juggle so many things: kids, spouses, pets, work, time for themselves, parents, and more. When I focus on one thing, I am much better than when I try to do too many things at once. If you’re going to spend the time to talk with me, be there for me fully. You can trust that I am doing the same.
First choice for a new career: Olympic athlete—runner, gymnast, skier, surfer—is that an Olympic sport? Once we cure CMT I’ll be able to do those things I never could.
Most influential book: Most books influence me – some call me to travel, some call me to dream, some call me to act. Right now, I’m reading three books: a fictionalized version of Cleopatra’s life, a spiritual book by Eckhart Tolle and a book about college admissions. But maybe Brene Brown’s Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead is most relevant to me right now. To paraphrase her, “It’s not the critic who counts but the man who dares greatly to step into the arena.” I chose to step into the arena when I started the CMT Research Foundation and her book names and validates all of the challenges that come with taking a big risk.
Favorite movie: My 16-year old daughter and I are revisiting the John Hughes movies of my teenage years and enjoying how much the teenage experience really hasn’t changed since then—except for social distancing, of course.
Favorite music: Currently I’m listening to a lot of Sara Bareilles. She’s a very talented musician and her lyrics are emotive. She’s great to listen to when I’m cooking, stretching, taking a bath, or hanging out on the patio.
Favorite food: I love to cook, and I love food so it’s hard to choose. My favorite cuisine is either Italian or Indian food.
Guilty pleasure: Eating anything with flour. I try to avoid flour because it doesn’t agree with me, but I just love a delicate pastry, an authentic Italian pizza crust and a slice of carrot cake with gooey cream cheese frosting.
Favorite way to spend free time: Moving my body in nature. Because my CMT causes muscle atrophy and often muscle cramping, moving my body keeps me strong and feeling well. And there isn’t a better way to move than when in nature—whether I’m hiking in the woods, kayaking, or swimming in a lake, or biking on a wooded trail. Not only does my body feel better, my head is clearer too.
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