Kari Rosbeck of TSC Alliance

    We Spoke to Kari Rosbeck of TSC Alliance

    As a part of our interview series called “Women Of The C-Suite,”  we had the pleasure of interviewing Kari Rosbeck, President and CEO of TSC Alliance.

    TSC Alliance, or Tuberous Scerosis Complex Alliance, is a nonprofit working toward a future where every person and family affected by TSC has what they need to live their fullest lives

    Kari joined the TSC Alliance in June 2001 and became President and CEO in November 2007. She is responsible for the overall management and administration of the organization.

    Thank you so much for joining us in this interview series! Before we dig in, our readers would like to get to know you a bit more. Can you tell us a bit about your “backstory”? What led you to this particular career path?

    Growing up, I always wanted to be an actor. I pursued every opportunity to hone that skill in high school and choose a college that aligned with my career goals. Although I made a living working in nonprofits as a development professional, my evenings and weekends were spent performing and producing theatre. When I was 27, my first child, Noell, died of sudden infant death syndrome (SIDS). It completely changed the trajectory of my life. It became clear to me that to honor my daughter’s memory and find purpose, I wanted and needed to devote my life to helping other families.

    I first worked in international relief and development, first at American Refugee Committee (ARC) then at International Service Agencies (now known as Global Impact). My boss/mentor at ISA became the CEO at the TSC Alliance and recruited me to lead the development of volunteer branches across the country. Sitting in living rooms, church basements and hospital conference rooms so that I could meet with individuals and families living with TSC was deeply moving. It became my life’s mission to work with them to impact research, develop community education, and heighten awareness of this all too often devastating disease, tuberous sclerosis complex (TSC). And that is what I’ve done, in my daughter’s honor, for the past 20 years.

    Can you share the most interesting story that happened to you since you began leading your company?

    Early in my tenure as CEO in 2008, I got a late-night call from a high school friend, Karen. She had recently adopted a daughter, Addie, who appeared perfectly healthy when they brought her home from the hospital. At 2 1/2 months of age, she began having repetitive movements in her left leg, almost like a leg twitch. She went on a long diagnostic journey of nearly four months. Addie had lost development milestones, was having 100s of seizures and as a parent, Karen felt powerless to protect Addie or stop her from hurting.

    Karen had seen a very early video the TSC Alliance had produced on infantile spasms and I appeared at the end. Our late-night call led to an appointment within two days at the TSC Clinic at Washington University in St. Louis when Addie was already 6 months old. After Addie’s MRI, it was discovered that she had “too many tubers to count” in her brain and she was suffering from infantile spasms and had tuberous sclerosis complex. She was prescribed a first-line drug for infantile spasms in TSC and within a few hours of taking the first dose, she never had another spasm.

    In that moment, realizing I could help Karen and Addie, I absolutely knew I was exactly where I was supposed to be.

    The second story I’ll share is being at a Curing the Epilepsies conference hosted by the National Institutes of Neurological Disorders and Stroke. There was a session on sudden unexpected death from epilepsy (SUDEP) and the speaker put up a slide comparing SUDEP to SIDS. The hypothesis is that SIDS may actually be SUDEP. It’s like my angel Noell was on my shoulder.

    Can you share a story about a mistake you made when you were first starting? Can you tell us what lesson you learned from that?

    Shortly after I became CEO, the great recession hit. There was a lot of organizational change taking place simultaneously and our financial reporting was behind. My experience had been in fundraising and volunteer management and I was newer to some of the administrative duties. My mistake was not asking for help very early on and not trusting my gut that we needed to review financial processes.

    Ultimately, we had to lay off half the staff in order to protect and preserve the organization and rebuild internal infrastructure. It was a difficult decision, but the right one. Today, we have an extremely healthy organization, with monthly projections to budget and for cash flow. We have active board committees, a strategic plan we live by every day, a dynamic research business plan, an engaged TSC community, and a staff with longevity.

    When the pandemic hit, I recognized some of the same financial patterns as the last recession. This time, I was ready to ask for help and make quick decisions. We put together plans for each department on what to cut in order to have a mild, moderate, or severe impact on our programs, research, and services. To help our TSC community, we developed an extensive webinar and Town Hall series to help them with the most difficult issues posed by COVID-19 and quarantining. We designed fundraising programs to preserve the TSC Alliance in March of 2020 and were able to implement these by April, even before we got our PPP loan. We hit this challenge head-on, early and nimbly. By asking for help from our board, our community, and our supporters, we were able to quickly pivot and not only survive but thrive.

    None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story about that?

    First and foremost, the TSC Alliance is successful because we depend on meaningful collaboration with our community, our board, our staff, and our partners. It takes everyone and I’ve gathered knowledge all along the way from so many individuals. The one person, however, that helped me the most during the past decade is my executive coach, Michael Harden. Mike was first my Vistage coach. Vistage is an awesome organization that helped me grow the skills I needed to be a stronger, more balanced CEO. Mike guided this process completely. Today, we work one-on-one and he coaches me through challenges and opportunities.

    In my work, I often talk about how to release and relieve stress. As a busy leader, what do you do to prepare your mind and body before a stressful or high stakes meeting, talk, or decision? Can you share a story or some examples?

    I have a degree in theatre from SUNY Albany which at the time was set up like a conservatory. In preparation for any performance, I utilized the skills learned in my voice class with vocal exercises. Before any important meeting, interview, or talk, it still centers me to go back to these basics.

    To prepare for a big decision, I seek the input of my executive and senior management team, key board and community members, and other advocacy leaders. I’ll use that knowledge, our strategic plan, and the financial health of the organization to make a big decision.

    As you know, the United States is currently facing a very important self-reckoning about race, diversity, equality and inclusion. This may be obvious to you, but it will be helpful to spell this out. Can you articulate to our readers a few reasons why it is so important for a business or organization to have a diverse executive team?

    There has been an awakening in our country and it has highlighted systemic and sometimes unintended biases. Having a diverse team, truly giving them a voice and an ability to implement genuine change, helps an organization better address and represent those of diverse backgrounds whether it’s race, gender, sexual orientation, ability and accessibility. We need to understand that from those who have lived that journey, walked in those shoes and understand better what it will take to create meaningful, systemic change and create equity, especially in our medical systems.

    understand the gaps in , Tuberous sclerosis complex is a genetic disorder caused by mutations in one of two genes that control cell growth. Two-thirds of people with TSC have no family history and we believe that means TSC affects all races and genders equally. TSC impacts one in 6,000 live births and each day two babies are born in the U.S. with TSC. As a rare disease, we have always focused on the spectrum of severity and impact on developmental and intellectual disabilities. Equity, diversity, and inclusion have helped our organization (ED&I) take a genuine, transparent and honest look at our organization. As we work to improve our communications, our intentional outreach, and our internal governance, our staff and board must reflect the diversity of our community. This will help us to better understand and improve our efforts, especially around health equity.

    As a business leader, can you please share a few steps we must take to truly create an inclusive, representative, and equitable society?

    I believe we need to first listen and hear. We need to seek an understanding of what others have faced throughout history and the barriers that still exist in order to take steps toward a more inclusive, equitable society. At the TSC Alliance, we have developed an ED&I task force with representatives from families and individuals impacted by TSC, as well as researchers, clinicians, and staff members. We have developed goals and created workgroups to create strategies and measurable outcomes for communications, outreach, and internal processes. The important thing is to start in a meaningful way and be intentional.

    Ok, thank you for that. Let’s now jump to the primary focus of our interview. Most of our readers — in fact, most people — think they have a pretty good idea of what a CEO or executive does. But in just a few words can you explain what an executive does that is different from the responsibilities of the other leaders?

    Ultimately, the success or failure of the organization is my responsibility. As the CEO of a nonprofit, I take my role of preserving the organization as primary. I am always under a microscope and my actions reflect how others see or interpret the TSC Alliance. A CEO is never “off.”

    What are the “myths” that you would like to dispel about being a CEO or executive. Can you explain what you mean?

    Myths: You don’t do any of the work and are just a figurehead. You work less. You don’t understand the financials. You don’t need to know the details.

    In your opinion, what are the biggest challenges faced by women executives that aren’t typically faced by their male counterparts?

    I think women face more questioning when proposing strategic or budget suggestions. There is still a notion that men speak with more authority, so I have had to find ways to make my voice heard. I often make sure I am joined by another staff member when holding meetings, particularly with men. There were a few uncomfortable situations I found myself in early in my tenure as CEO, so I developed strategies to not be vulnerable.

    What is the most striking difference between your actual job and how you thought the job would be?

    Before I became CEO, I was second in command. I was used to my opinion being asked for and being well-liked among the board, staff, and community. When I became CEO, I had to learn how to handle negative feedback, learn how to respond in thoughtful ways, and ensure others felt heard and trusted.

    Human resources is a much larger part of my job than I anticipated. I now have an appreciation of the work it takes to create and sustain a corporate culture, and I’m not afraid to take immediate action if an employee is disruptive.

    Being under the constant microscope was also a tough adjustment. Literally, how you say things, your facial expressions, and your responses are constantly being judged or (mis)interpreted.

    Certainly, not everyone is cut out to be an executive. In your opinion, which specific traits increase the likelihood that a person will be a successful executive and what type of person should avoid aspiring to be an executive? Can you explain what you mean?

    Being a CEO takes incredible flexibility, outstanding drive, fortitude, excellent listening skills, and empathy. Someone who is overly structured, nonemotional, and wants to just work an 8-hour day would have a difficult time.

    What advice would you give to other women leaders to help their team to thrive?

    We implemented the Five Dysfunctions of a Team and it completely changed the dynamic of our organization. I would highly recommend this process, as it’s taught us so much about how to trust and communicate and allowed us to stop having backroom conversations and talk to each other directly. It’s made all the difference. Here are a few of the key tenets we’ve taken to heart at the TSC Alliance:

    • Without true trust, you cannot have meaningful conflict and instead get artificial harmony.
    • With commitment, people can hold each other accountable and ultimately lead to results.
    • Building a well-functioning team where all have a voice will lead to greater success.

    How have you used your success to make the world a better place?

    The TSC Alliance succeeded because we have been able to engage and collaborate with all key stakeholders. I don’t think of these as my personal successes, but the work I am contributing to at the TSC Alliance is inherently improving the lives of patients and families across the country. My life’s work is devoted to honoring my daughter, and I can’t think of a better way to do so than to lead a team who is creating significant impact in the rare disease space.

    We’ve grown from 95 volunteers to more than 2,000 today and developed 36 volunteer branches across the U.S. We have grown our organizational budget from $2.1 million to $7.1 million. Working with the community, we have been able to advocate for $97 million in appropriations from the TSC Research Program at the Department of Defense. The TSC Alliance has also raised $17 million for TSC research programs over the past 10 years.

    We have educated the TSC community to participate in meaningful research and as a result, there are now two FDA-approved drugs specifically for TSC. Only 5% of rare diseases have a treatment and we have two. These drugs shrink tumors in the brain and kidney and treat seizures associated with TSC. There are now 65 TSC Clinics providing comprehensive care across the U.S. and 10 internally recognized clinics.

    The TSC Alliance has also developed formalized Global Alliances with six countries around the world, including Canada, Hungary, India, Israel, Mexico, and Thailand. We provide them with start-up grants and help develop community education and support programs.

    What are your “5 Things I Wish Someone Told Me Before I Started” and why? (Please share a story or example for each.)

    1 . Make sure you know your financials inside and out, at all times, and where you are headed to budget. By understanding and knowing our financials and projections, we were very nimble in our ability to pivot quickly during the pandemic.

    2. Create a strategic plan with measurable results, make it operational, report on it frequently and tie all key performance metrics to it. The TSC Alliance has now created three strategic plans since I have been CEO. Previously, key stakeholders had conflicting priorities, spoke in different vernacular, and based success on the completion of more short-term projects. We sought input from all stakeholders in the creation of the strategic plans, and implemented a manifesto that gave us a common language and way to raise awareness of TSC. By frequently measuring our progress with a longer-term vision, we were able to drive the progress of our organization forward in a much more expedited way.

    3. Reach out to others and amplify your organization and services through collaboration. In 2015, we joined a partnership with the Child Neurology Foundation to establish Infantile Spasms Awareness Week. It was important to raise the visibility of infantile spasm, as TSC is the leading known genetic cause of infantile spasms and early diagnosis is important for better outcomes. Today, 35 organizations are now part of the Infantile Spasms Action Network. In addition to raising awareness, we have developed a mnemonic (STOP IS) that we believe has led to quicker diagnosis and appropriate treatment.

    4. Develop a hiring process, include your team, and make sure any new hire is a cultural fit. Creating the right culture takes the effort of every team member. We now have a five-part hiring process.

    15-minute screening interviews with key questions on work ethic and to identify culture fit.

    Identify 10 individuals for 1-hour interviews with a staff panel and set questions.

    Finalize 2–3 candidates, give them a homework assignment, and put them in the job.

    Interview with the entire staff team and have them take an Organization, Analysis, and Design (OAD) assessment.

    Check references with questions that get at workplace behavior and working as a team.

    5. Be nimble and always use your creativity. One of the key things we look for in staff is high versatility. It’s one reason we were able to nimbly adapt to the challenges of COVID-19. We also have staff with photography and film degrees in addition to my theatre background. Since so much of what we produced for the community and in events was visual, we were able to maximize our creativity, visual representation, and story telling. It helped immensely with production. We also instituted ‘Telecommuting.

    You are a person of great influence. If you could inspire a movement that would bring the most amount of good for the greatest number of people, what would that be? You never know what your idea can trigger.

    It’s estimated that 300 million people are impacted by rare diseases. Many rare diseases, similar to TSC, actually impact research on more common diseases. In TSC, our reach has a direct impact on what we know and potential treatments for epilepsy, autism, and cancer. My dream would be to start a movement aligning those with means to invest in rare disease research so that we could literally cure many of these rare diseases, or at least lessen the diagnostic journey and make them chronic diseases.

    Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

    “What doesn’t kill you, makes you stronger.” I recited that for three days after my daughter passed.

    We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this if we tag them

    Jeffrey Bezos. As one of the most influential individuals of our time, Mr. Bezos could have an incredible impact on those with TSC — from access to medications to amplifying our story through media to investing in our groundbreaking research. He would not only create a more hopeful future for those with tuberous sclerosis complex but also those living with more common diseases. Changing the course of TSC is possible. I’d like to talk to him about how he would help make that possible.