RARE Daily

Rare Leader: Carolina Sommer, CEO, Born a Hero, Research Foundation

July 16, 2020

The Basics
Name: Carolina Sommer

Title: CEO and Founder

Organization: Born a Hero, Research Foundation

Social Media Links:

Disease focus: 15 FGFR Syndromes, a group of rare, genetic bone disorders

Headquarters: Snohomish, Washington

How did you become involved in rare disease: My daughter Mariana has Pfeiffer syndrome, which is one of the FGFR syndromes. The lack of information and all the surprises that came with her syndrome (along with the bullying) made me feel that I needed to do something about it. Everything I read about Pfeiffer Syndrome was just that it was associated with craniosynostosis. However, through our support groups, we found about 42 different conditions that are possibly associated with these syndromes. Mariana is a spunky little girl and her positive attitude inspires me every day. I wanted to fight alongside her on this journey and empower her.

Education: B.A. degree in theoretical mathematics from the University of Washington

The Organization
Organization’s mandate
: Our mission is to accelerate innovation and research to improve the quality of life for patients with FGFR syndromes, including Pfeiffer syndrome.

Organization’s strategy: We believe that through collaboration we can accelerate research. We work hard on being intentional about encouraging collaboration internally and externally. We study 15 rare disorders and host a collaborative research network symposium for these syndromes. We also host a Seattle rare disease fair where we connect researchers with rare disease advocates and organizations. We want researchers to learn about different rare diseases in hopes that they will want to incorporate a rare disease into the research that they’re already pursuing. We’ve seen it happen. At the fair we try to be inclusive and bring together all stakeholders involved in rare disease research. We’re also in the process of starting a rare disease council in Washington state. We are stronger together, so we have partnered with more than 10 organizations in our efforts to help the rare disease community.

Funding strategy: The Rare Disease Fair is currently our main source of funding research, along with smaller events that we host. We started the fair three years ago, and then last year we partnered with Seattle Children’s Research Institute to host it.

What’s changing at your organization in the next year: Our Rare Disease Fair has grown. It’s been a big hit. We will now be having a rare disease policy round table at the Rare Disease Fair. We’re in the process of starting a rare disease council in Washington state and possibly an anti-discrimination type of council with some organizations we’ve partnered with (we hope to provide educational materials for schools.) We are building platforms that complement our collaborative research network approach to keep our researchers and scientists engaged. Also, we are in the process of starting a research registry.

Management Style
Management philosophy: We are a 100 percent volunteer run organization. We don’t have a formulated management philosophy. We listen to everyone’s ideas and let our volunteers work on things that they’re passionate about.

Guiding principles for running an effective organization: Never be afraid of asking questions and approaching people. Everyone’s story is powerful. Your passion will open a lot of doors for you. You can lead a group of researchers and doctors to find treatments with no medical background. Partnership is important because together we can be stronger. Collaborating with people outside academia, including the pharmaceutical industry, has proven to be helpful and supportive. Being creative in how you fund your organization is important. Help as many people as you can who are in need, and in return, you gain so much more.

Best way to keep your organization relevant: Keeping up to date with the latest research and maintaining engagement with your medical board and researchers through a forum-like discourse. Staying in touch with patients and all parties involved in research. Being involved in working groups to understand the needs of the general rare disease communities, such as the Everylife Foundation Community Congress working group.

Why people like working with you: I’m high energy, persistent, and passionate about what I do. I’m positive, inclusive, and enjoy sharing ideas and collaborating.

Mentor: My husband David Sommer, vice president of Born A Hero. My rare disease colleagues, such as Monica Weldon, the president, CEO, and founder of Bridge the Gap and Vicki McCarrell, founder of Moebius Syndrome Foundation. Max Brown from We Work for Health, Stephanie Fischer from RDMD, Anna Holt from Pfizer, and Born a Hero’s medical board.

On the Job
What inspires you: Mariana’s attitude towards life, my husband and my faith. I love the rare disease community. It feels like family. I love the kids in our support groups, they are so fun. That’s what keeps me going.

What makes you hopeful: All the people on our team who are leading experts in the 15 FGFR Syndromes, and the cutting-edge research that’s being done to help the rare disease community. Also, how much the rare disease voice has grown in the past several years in our country.

Best organization decision: The Rare Disease Fair has been one of the best decisions we’ve made.

Hardest lesson learned: You can’t rely on other people to help a lot of times.

Toughest organization decision: Putting off the Rare Disease Fair due to COVID-19, since the fair is our biggest source of funding.

Biggest missed opportunity: Not attending all the conferences I should because my kids are still little. I have a three-year-old and an eight-year-old. Going to these conferences is how we have found all our researchers and our medical board members.

Like best about the job: The people I get to meet.

Like least about the job: The late nights of work and how tired I usually am as a result of that. I work after the kids go to sleep. Then there are the usual house projects: cleaning and picking up around the house, taking care of the animals, the yard, dealing with my daughter’s rare disease and my auto-immune disease, and homeschooling.

Pet peeve: All the drama and politics that stand in the way of research.

First choice for a new career: Starting another nonprofit. I have one in mind, but not sure I can take the load right now.

Personal Taste
Most influential book
: Brain Rules: 12 Principles for Surviving and Thriving at Work, Home, and School by John Medina and Chasing My Cure: A Doctor’s Race to Turn Hope into Action; A Memoir by David Fajgenbaum 

Favorite movie: Hook – I have seen this movie too many times.

Favorite music: Contemporary Christian music

Favorite food: Fried chicken, ribs, and carne asada

Guilty pleasure: Chocolate

Favorite way to spend free time: With my family. If I had any extra time in my life, I would play the guitar, paint, and play volleyball.

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