RARE Daily

Rare Leader: Amy Brin, Executive Director, Child Neurology Foundation

May 30, 2019

The Basics
Name: Amy Brin

Title: Executive director and CEO

Organization: Child Neurology Foundation

Social Media Links:

Headquarters: Minneapolis

How did you become involved in rare disease: I’m an advanced practice nurse and boarded in pediatrics and hospice and palliative medicine. When I was in practice, a majority of my patients were children living with rare disease. I learned about rare disease from them and their journeys. I learned how to help support them and their families when they were reaching the limits of medicine. That’s where I witnessed how the healthcare system was not designed to care for those diseases. I remember feeling like I don’t know what to do for these patients. I never really thought I was going to leave clinical practice, but life unfolds itself in different ways. Today, I feel so grateful for those patients. They left a large imprint on me, and I think about many of them in my daily work at CNF.

Previous career
: Advanced practice nurse boarded in pediatrics and hospice and palliative medicine.  

Education: Bachelor of science in communications from Ball State University, bachelor of science in nursing from Vanderbilt University, master of arts in political communications from Miami University in Ohio, and masters of science in nursing from Vanderbilt University

The Organization
Organization’s mission: CNF is committed to serving as the collaborative center for education and support for children and families living with neurological conditions.

Organization’s strategy: We to keep it simple. We do the right thing for kids and their families living with neurologic conditions. We bring people together in all our work, we listen to all the voices in the community to shape our work, and we then respond strategically and within our own organizational strength. We stand in our values.

Funding strategy: Diversify, diversify, diversify. We believe in fully engaged partnerships. We are cautious of any transactional interactions. We don’t hold fundraisers. We hold friendraisers. We are supported by individuals, private foundations, other nonprofits, and corporate sponsors as well.

What’s changing at your organization in the next year: Almost everything. We just tripled in size in our staff this year. We want to be prepared to make a bigger impact in the community. Another renewed focus will be our advocacy and promotion of the importance of the patient-physician partnership. More programs, education and conversation about how to build and sustain that critical partnership.

Management Style
Management philosophy: Be honest. I set very clear expectations. There is 100 percent accountability at every level of the organization. I try to see individual’s strengths and build opportunities for them to be put to work at CNF. I try to provide opportunities to challenge individuals in areas that perhaps they could grow, as I believe that it’s the individual’s choice to either rise up or not. Then I just repeat that cycle of expectation sharing and accountability.

Guiding principles for running an effective organization: I believe in servant leadership. I believe that decisions are based not on the leader, but on what’s best for the organization and its mission. This requires you to check your ego and stay curious. Be kind. Own what I know, and what I don’t know. It requires me to know what CNF’s “have-tos,” “non negotiables,” and ”negotiables” are. And once those are established, I believe in action.

Best way to keep your organization relevant:  I keep my mouth shut and do a lot of listening. I try to listen a lot more than I talk in meetings. Sometimes I’m successful at that and sometimes I am not. I always try to think in terms of what’s our strength and what’s our capacity, so that when we say we will do something, we actually do it. The other thing is don’t look back. Own your decisions and keep moving forward.

Why people like working with you: Kevin Bacon has one of the longest-standing marriages in Hollywood. When asked what’s his secret? he said “Keep the fights clean and the sex dirty.” Hilarious. I’ve thought about that in my own life. I always try to be kind, but I always try to bring the fun.

Mentor: Early in my career, a physician named Tom Tonniges, was my mentor. He was a community pediatrician who left Omaha to work for the American Academy of Pediatrics in Chicago. He had a whole vision to start an initiative about community pediatrics and how to better support the physician living and working in a community, the care a child would receive his/her own community would be more comprehensive and integrated. Anything that he said or did was in pure advocacy for children. I saw daily what it looked and felt like to have a successful leader walk his talk. Honestly, I started working for him when I was 22. There was no way I should have had that job. But he saw something in me, and would throw me into all these crazy, high-level meetings and presentations that I should never have been doing. Like on a whim, I was presenting to the International Board of Shriners Children’s Hospitals or leading a meeting with the President of Kosovo about the infant mortality rate. He believed in me and showed me it was okay to take risks when you have people that believe in you. He is no longer with us, but I try to have his legacy as part of my work.

My second mentor is Cathy Rydell. She is the executive director and CEO of the American Academy of Neurology. She was my first female mentor professionally. I met her at a time that I was in a freefall professionally. She is very much the real deal, so I immediately asked her to mentor me. We set up quarterly appointments about 5 years ago, and I thought she would start training me on technical aspects of being a CEO. I’m a nurse, so what do I know about running a business? She allowed me to be vulnerable in those mentorship sessions and share with her what questions and concerns were really itching at me. She taught me in these conversations that leadership was about developing the best version of yourself, not so much tactical skills. If you can bring your full self to your leadership role, that strength causes others to also rise and be their best version. Everyone wins.  Simultaneously, if you have your full self as a leader, you are more ready and able to adapt when the plan you’re trying to execute goes awry. Cathy saw me as a CEO before I saw it for myself. And I will forever be grateful to her for seeing me.

On the Job
What inspires you: I like big, complex, gnarly problems.

What makes you hopeful: I really believe in people. I believe they are the ones who create solutions. I am always inspired by people’s capacity to love and learn and be curious and fall and get heartbroken and then pick themselves back up, and they just do it again and again and come back stronger. In the rare disease community, I’m always inspired by people’s altruism and their desire to make it better for the next person.

Best organization decision: By far, maintaining and growing our management service contract with the American Academy of Neurology. It’s an economy of scale strategy. For a small organization, there are limits to what benefits we can offer our staff or information technology we have available, or financial management systems we have access to as we grow our capacity. We purchase those services through a contract with the AAN, and it allows us to retain and recruit top talent, be strategic about how we use our resources and execute sophisticated daily operations.

Hardest lesson learned: That people lie.

Toughest organization decision: There’s been a ton here with CNF. I stepped in as interim executive director in 2014. The then president was W. Donald Shields. The organization had been around for about 13 years at that point. Under his leadership, he said we needed to look to see if we were still relevant. The Board wasn’t  sure if we were making an impact. So, we did a 360 as an organization. We looked at the data, and honestly didn’t  know at the time if we should keep our doors open. But Don rose, and said we should absolutely keep our doors open, and began to share the vision he had for a collaborative center in the child neurology space. He charged the board to take a risk, and they said, “Let’s do it.” In 2014, we rebranded and revised our mission. Don taught me that true leadership shows up when it’s needed. And when you are an effective leader, people are willing to take a risk with you.

Biggest missed opportunity: I think about this lot. When I started at CNF, I was getting a lot of advice on marketing because we were rebranding and refocusing our mission. For me, I’m a clinician by training, so I was like, “I’m not spending money on marketing. That’s foo-foo.” I’m a midwestern girl at heart. I figured our word and our work will create our brand. People will get to know us that way. Five years later, I started to spend some money on marketing and bam! The ROI is immediate. I see now if I had added in marketing and promotion, who knows where our brand identity would have been today. The biggest lesson is don’t let your personal predispositions cloud your professional judgment. Remain open.

Like best about the job: I am so crazy in love with our team at CNF. We are having so much fun right now. I think it is because we took the time to bring in the right experts for our Board and our staff, and make sure that they match our culture. It took time and patience, but it has paid off.

Like least about the job: It eats at me when a colleague is making a conversation or meetings about his/her ego or some sort of political game is the focus versus the actual topic at hand. I feel that wastes so many opportunities, and we miss the impact we could be having. People get sick of me saying this, but if you want to talk about nonsense or waste time, please go work at Pottery Barn. Because you can sit and talk about next season’s color, and life really won’t be that impacted. But for us in health care and advocacy, there are major urgencies to face. I think we must be good stewards of these roles we are fortunate to have, and we must act and think about the impact of our work.

Pet peeve: Arrogance and complacency. Also, I think lying sucks.

First choice for a new career: I’d love to be a florist.

Personal Taste
Most influential book:
I have two. Sacred Contracts: Awakening Your Divine Potential by Caroline Nyss and The Four Agreements: A Practical Guide to Personal Freedom by Don Miguel Ruiz and Janet Mills

Favorite movie
:  The Contender. 2001. Joan Allen is baller in it.

Favorite music: Off of U2’s Achtung Baby album, the song Who’s Going to Ride Your Wild Horses.

Favorite food: Crab legs, hold the butter, but serve it with an ice chilled mug of beer

Guilty pleasure: I pick at face when I’m anxious—seriously. Did I just admit that?

Favorite way to spend free time: I love to laugh. I love to laugh with my boys. I love being on a boat, playing a jukebox, or seeing a parade, or have a good morning run. If I could do all of those in a day, I’d be super happy.

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