RARE Daily

Rare Leader: Karen Ball, CEO of The Sturge-Weber Foundation

July 2, 2020

The Basics
Name: Karen Ball

Title: President and CEO

Organization: The Sturge-Weber Foundation

Social Media Links: 

Disease focus
: Sturge-Weber Syndrome (SWS) (encephalotrigeminal angiomatosis) is a congenital, non-familial disorder caused by the GNAQ gene mutation. It is characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with Sturge-Weber can include eye, endocrine and organ irregularities, as well as developmental disabilities. Each case of Sturge-Weber Syndrome is unique and exhibits the characterizing findings to varying degrees.

Headquarters: Houston

How did you become involved in rare disease: On October 11, 1986, my daughter was born with Sturge-Weber. She had a bilateral birthmark on her face and glaucoma in her left eye. At that time, the rare disease community was fledgling and probably not even that at best. Once the shock wore off about having her, then we reached out to find other families through NORD [National Organization for Rare Disorders]. We found that there were about 40 families, which they had begun to put into a database. I met up with another mom and she was more interested on the support side. I wanted to add the research piece to it. With her blessing, we started the foundation when my daughter was about three months old.

Previous career: Elementary education teacher, then I was going to be a stay-at-home, bon-bon eating momma, but that didn’t happen.

Education: B.S. education from Baylor University. Mediation certificate from Phoenix Strategies in Colorado Springs, Colorado.

The Organization
Organization’s mandate:  Our mandate is to build a support network for self-advocacy and to foster and facilitate research. In the early years, people wanted to hold their hand and show them what to do. Now, there’s none of that. It’s just, “Give me what I need and be on your way.” Initially, we used to say support, but now I think this new generation doesn’t like that term.

Organization’s strategy: Our strategy is to bring a diverse group of stakeholders together to identify and address an opportunity or challenge that needs to be met. And then to use care providers, experts, and researchers to develop the strategy to go out and find the answers.

Funding strategy: Our funding strategy is having diverse revenues streams—grants, corporate sponsorships, individual donations, special events, campaigns, and that type of thing. I’ve always believed in that, which is why in this environment we have not had to apply for the PPP money. I’ve always believed in having nine months to a year in reserves for emergencies.

What’s changing at your organization in the next year: We are at that stage of organizational growth where we’re now going to be bringing on a special events manager to facilitate more local events and awareness activities. We’re also going to need a research manager director to work with our clinical care networks and our international research network and drive their goals and projects.

Management Style
Management philosophy: I’m old school. I believe we’re all adults, and if we make a commitment to get a job done, I don’t want to micromanage you. I want to be in open communication to not put any stumbling blocks in place for you to succeed. I believe in a team, collaborative effort. I might be the CEO and I have to come up with a final decision to move forward, but I hire the right people for the right job at the right time. Usually that involves people who have a different skillset that I may not know anything about that we need for the foundation to move forward.

Guiding principles for running an effective organization: Good planning and forward-thinking, always with a patient focus and never forgetting who we serve and why we’re here. That’s it.

Best way to keep your organization relevant: It’s a great question and it’s perfect timing because I just got off a call with a fellow that we work with that does video campaigns and commercials. And we were just planning our strategies for next year. It’s never being afraid of change and it’s embracing change because this is always going to happen, but not foregoing what our core values are and what our core strategies are. It’s just being adaptable and flexible.

Why people like working with you: Because I work hard and I play hard, and I don’t take myself seriously. I remind people that in the midst of all the doo-doo and strife that we have in life, we should just live in joy, because you’re never going to get this day back.

Mentor: From the organizational standpoint, Kathy Hunter of the International Rett Syndrome Association was my first mentor. She showed me how to work with corporations and to not be afraid to ask for anything because we’re in a fight for these kids’ lives. From a clinical care, research standpoint, Jonathan Pevsner. He’s a scientist and he found the gene for Sturge-Weber, but he’s a very humble person. He always reminds you that it’s not about you.

On the Job
What inspires you: I like the mental challenges of finding a research idea or thread that might be in  another disease that’s similar to ours and then ascertaining if that particular compound, protein, et cetera, that they’ve identified, could potentially work for us.

What makes you hopeful: We found the gene and so our next step is that we’re going to be working with animal models. That’s exciting from a parental side, having a daughter who’s almost 33. 

Best organization decision: The best decision was when we hired a fundraiser for the first time. We were wanting to do a capital campaign and I knew I didn’t have the skill set to call on this laser company that we wanted to take the lead sponsorship. It was making that leap of faith that the money that we were investing was going to come back and it did. And then that morphed us to the next level of organizational growth. So that was worth it.

Hardest lesson learned: The hardest lesson learned for me, as an organizational leader, was learning to identify when an employee was reaching burnout or was no longer the right fit for the job role, and to gently let them go. I’m a loyal person, and in the past would have hung on to people longer than would have been good or worthy for the foundation’s resources.

Toughest organization decision: In 2008, when the stock market crashed, I was going to have to lay off half of our staff. We all took a 40 percent pay cut for a year so that we could keep the organization going. I did as well.

Biggest missed opportunity: I’m not one to miss out on an opportunity. I would say it’s that, either corporate sponsors or pharmaceutical companies thought of us as this little group that didn’t have either the organizational maturity or bandwidth to partner with them on something. I’ve always positioned our foundation to prepare for the next step, or to think, where do we want to go next?

Like best about the job: I like the flexibility. I like the intellectual stimulation of it. I like engaging with diverse types of people from different walks of life and cultures. I love the travel and just learning about other people’s lifestyles, and how they tackle things.

Like least about the job: I don’t do well if I have to sit. A little thing is the administrative kerchunk-a-chunks. I hate meetings and sitting there. I don’t like it if every day has to be the same thing sitting behind a desk. If I had to sit behind a desk—Oh Lord, have mercy, kill me now.

Pet peeve: It irks me when people do something for self-glory. It’s not about me, it’s not about them. It’s about the child they brought into this world that struggles every day with seizures, glaucoma, and a visible difference that society judges them by.

First choice for a new career: I’m sitting in Colorado with four, 14,000-foot peaks surrounding my home. It would probably be contemplating my navel every morning and evening with a cup of coffee and a glass of wine.

Personal Taste
Most influential book: Dr. Folkman’s War: Angiogenesis and the Struggle to Defeat Cancer by Robert Cooke and Fearless: The Undaunted Courage and Ultimate Sacrifice of Navy SEAL Team SIX Operator Adam Brown by Eric Blehm

Favorite movie: A Star is Born (Kris Kristofferson version)

Favorite music
: Country

Favorite food: Mexican

Guilty pleasure: Netflix binging

Favorite way to spend free time: I like to hang out with my dog and kids and family.




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