Rare Leader: Kari Luther Rosbeck, President and CEO of the Tuberous Sclerosis Alliance

The Basics
Name: Kari Luther Rosbeck
Title: President and CEO (joined organization in 2001, became CEO in 2007)
Organization: Tuberous Sclerosis Alliance
Disease focus: Tuberous sclerosis complex, a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. It is the leading genetic cause of epilepsy and autism.
Headquarters: Silver Spring, Maryland
How did you become involved in rare disease: I was recruited to Tuberous Sclerosis Alliance 16-and-a-half years ago by my mentor, who I had worked with at another organization. He knew my passion for not only raising funds, but mobilizing community. They were in the process of rolling out a new volunteer program here. At the time there were 95 identified volunteers, about half of which who were active. We rolled out volunteer branches all across the country. Today we 37 volunteer branches covering all 50 states. They are our ambassadors to their local communities. They provide support information, help raise the public profile of the organization, and are a partner with us in raising funds through community-based fundraising.

Previous career: I have always been in nonprofits. Prior to this, I was working in International relief and development.

Education: B.A. in Theater from the State University of New York at Albany

The Organization
Organization’s mandate: We’re dedicated to finding a cure for Tuberous Sclerosis Complex while improving the lives of those affected by raising the public and professional profile of the disease to hasten diagnosis and better quality of life, and we fund and drive research.

Organization’s strategy: We have an awesome research platform. We created a capital campaign and research platform called “Unlock the Cure.” Part of our research platform is research grants. We try to fund $450,000 in research grants a year. In 2006, we launched our natural history database, which now has 2,114 participants. They are entered by the clinic from medical records. We started a biosample repository that is linked to our natural history. That’s really new. Right now, we have about 350 samples so far. Our goal is to have 1,000 samples in the biosample repository. We have a preclinical consortium that we’ve launched. We licensed three mice—one epilepsy model and two tumor models—and contracted with CROs. We have a consortium with academia, industry, and our organization representing the patient voice. We will fund screens on drugs recommended by academia. We’ll screen and pay for half of a study to protect IP and give the sponsoring institute the opportunity to file a patent. For companies, we’ll run confidential screens with the idea that we’re really promoting drug development in TSC.  We have six companies that are members. We’ve screened 12 drugs and found some interesting results. We have a patent pending. The last part is our clinical research consortium with a select number of TSC clinics. That came together in 2011 to do biomarker studies. They found a very specific EEG spike and wave pattern indicative of infants who will have epilepsy.  That same group is now doing the first clinical trial in the United States to prevent epilepsy by taking that biomarker into practice.

Funding strategy: Our funding strategy is to work with our community to raise funds through events. We also are able to work with industry on grants. We have some significant major donors, and have a president’s council for donors who make $100,000 for two years. We have a major, major donor, who granted us $1.5 million last year. It’s important that we keep a balance between operating and research specific funds. We have two sides of our mission, and we want to make sure we have enough funds to be flexible to spend where they are most needed.

What’s changing at your organization in the next year: We’re going to have our world conference. With the world conference, we’re going to be taking biosamples there. We’re going to start entering people into our natural history database. You won’t just have to be in the clinic anymore. We’re continuing to grow our preclinical consortium and hope to test 12 new drugs next year. We’re coming to the end of our existing strategic plan and beginning a year-long process for our next strategic plan.

Management Style
Management philosophy: Teamwork. Everybody has a voice and everyone can have an impact. We practice that in everything we do. We’re a successful organization because we involve the patients, our volunteers, and our staff working collectively to ensure that we meet our strategic plan.

Guiding principles for running an effective organization: I think everything starts with the strategic plan. The board creates annual organizational goals for each of our board committees, and every employee’s key performance objectives are then tied to the annual plan and the strategic plan so everyone goes in one direction. If you’ve done a really good job, you’ve of course included your patient community through a constituent survey, or advisory committee, so everyone is bought into the vision you’ve created to implement over the next five years. From a management point of view, you always need to know where you stand. We have some pretty sophisticated forecasting models and we look at them every month so we always know where we are financially at the moment and where we’re going to be at the end of the fiscal year. What’s made us successful is that we always know where we are.

Best way to keep your organization relevant: In this day and age when things are changing so quickly, you have to pay attention and be nimble. We have a strategic plan, so If we see an opportunity, we look at the strategic plan and see if it fits into it. Or, if we see such great opportunity, we will discuss with the board if it is something we need to explore. We’re not afraid to think big because we’ve seen that the passion in our community has really made amazing things possible.

Why people like working for you: Because every person matters in this organization. I believe everybody has something to contribute. We promote from within and find out what people’s interests are and try to give them the skills to grow into a position.

Mentor: My mentor is Mike Coburn, who now works for Research!America He hired me at the International Service Agency, and then at the Tuberous Sclerosis Alliance to do grant writing and event planning. Knowing my background of having a child who had died of sudden infant death, and knowing I’m good at building relationships and mobilizing communities, he hired to come to the Tuberous Sclerosis Alliance. He took me under his wings. He taught me how to look at an organization as a whole, the importance of the patient voice, and the compassion to drive an organization forward. Another Mike, Mike Harden, at Visage, an organization for CEOs that helps them balance and grow a business. He was my group leader. He really helped me think about how to build and grow the Tuberous Sclerosis Alliance. He helped me think about how to grow a business. The third Mike was Mike Henley. I worked for him at Junior Achievement, and then I worked for him at the American Refugee Committee. He taught me everything I know about fundraising.

On the Job
What inspires you: All of the families and seeing the difference we have made year after year. When you can look back 16-and-a-half years and see where the organization was, people were looking for answers and at that point you could hold their hand and support them, to where we are now, talking about preventing manifestations of the disease. It just inspires me every day that people’s quality of life is impacted so dramatically. I’ve seen young adults grow into adults. I’ve seen babies grow into teenagers. It’s in front of you every day. When the days are tough for me to get through, I think about those families and what they have to experience every day. And my daughter who died of sudden infant death. She’s always an inspiration.

What makes you hopeful: I think we’re going to beat this disease. There’s a light at the end of the tunnel, and I think we are getting there. At least within my lifetime, people are going to be able to live with tuberous sclerosis complex and have a quality of life, and control the manifestations.

Best organization decision: Hiring Steve Roberds to be our chief scientific officer. He came out of industry and it was at a time when Novartis’ drug Afinator had been approved for tuberous sclerosis. We were at this crossroads of no longer just basic science. We knew clinical trials would be our future. We needed somebody who understood the drug development pipeline and could drive change in research for our organization and this disease. He’s made a dramatic difference for our organization.

Hardest lesson learned: The recession. It’s part of why we do forecasting now. We keep an eye on what’s happening in the country and the economy. When I first became CEO, we had a lot of layoffs because it was a horrible time. We’ve greatly diversified how we raise funds to make us less vulnerable. And we are very mindful of having backup plans in case anything happens to the economy again.

Toughest organization decision: The decision to not fund any new research one year during the recession because we wanted to maintain the commitment we had made to researchers in prior years. It was the right decision for our organization. I didn’t want us to be seen as an organization that didn’t meet the commitments it already made.

Biggest missed opportunity: We could do better doing some research fundraising outside our rare disease families. We’re working on that now. Investing in TSC can and does have implications in cancer, epilepsy, and autism. Those are missed opportunities, and we are addressing them now.

Like best about the job: I love that we continue to evolve, and that every day is different. Every day I get to interact with families impacted with TSC. I like the challenge of creating new programs that I know will make a difference and then going out to find the resources to make it happen. And I like telling our story. It’s my favorite job I’ve ever had and I’ll never leave.

Like least about the job: I don’t like it when we’re behind budget. When things are tight, I have to prioritize what we can and can’t do. I want to be able to move the needle and do everything. Sometimes you just can’t do that.

Pet peeve: Being organized. I can’t stand when people aren’t organized and can’t remember details. It makes me crazy. I want people to understand the big vision and be able to recall the details.

First choice for a new career: Go back to theater.

Personal Taste
Most influential book: The Secret by Rhonda Byrne. I read it at a time when I was in a transition in my life and I sat down and wrote out my goals and I wrote down that I wanted to be a CEO and the next month, I was a CEO.
Favorite movie: Lord of the Rings: Return of the King
Favorite music: James Taylor
Favorite food: Pizza
Guilty pleasure: The Minnesota Vikings and going to games and screaming
Favorite way to spend free time: With my husband and kids travelling, or going to movies.

November 30, 2017