RARE Daily

Rare Leader: Katrin Ericson, Executive Director, The RUNX1 Research Program

July 9, 2020

The Basics
Name: Katrin Ericson

Title: Executive director

Organization: The RUNX1 Research Program

Social Media Links:

Disease focus: RUNX1 familial platelet disorder with predisposition to blood cancer is a rare, hereditary blood disorder caused by mutations in the RUNX1 gene Such mutations result in lower levels of RUNX1 protein, which leads to both a low number and dysfunctional platelets. RUNX1-FPD patients are more than 30 times more likely to develop leukemia than the general population. In addition to the high risk of blood cancer, patients suffer from bleeding issues their entire life. Through ongoing research supported by RRP, our partners and the NIH, scientists are learning more each day about RUNX1-FPD.  In fact, we’ve learned in just the last year that the disorder is associated with many other health issues beyond the blood involving the skin, respiratory, gastrointestinal, musculo-skeletal, and other auto-immune disorders.

Headquarters: Santa Barbara, California

How did you become involved in rare disease:  It was by chance through a fellow scientist I ran into at Amgen, who I hadn’t seen in almost 10 years. I was telling her about my career path and at the end of our conversation I shared that I see myself returning to the nonprofit world. She said, I just came across this young nonprofit organization that’s looking for an executive director and it’s a rare blood disease resulting from mutations in RUNX1. She said, “You’d be perfect for it.” The reason she said that was because I had studied the RUNX1 gene in grad school. I was studying how RUNX1 controlled the generation of blood stem cells. She said, “Take a look. You might want to learn more about the position.” After our meeting she sent a note to Dr. Nancy Speck, the chair of the scientific advisory board and said, “I just ran into Katrin. You might remember her work from UCLA.” Dr. Speck actually reached out to me and said, “You should take this job. The two founders are lovely to work with and you’ll be back in our hematology community.” I ended up having a great interaction with the two founders, Tim and Monica Babich, who founded the organization. Tim is a RUNX1 mutation carrier and has passed it onto one of his sons. He comes from a long line of many generations who have dealt with and suffered from this disease.

Previous career: Director of medical affairs for a biotechnology company. Worked in the nonprofit world prior to that.

Education: B.S. in biological sciences from University of California, Santa Barbara; Ph.D. in molecular, cell, and developmental biology from the University of California, Los Angeles

The Organization
Organization’s mandate: Our mission is to improve the quality of life and prevent cancer in patients with RUNX1-FPD. We do this by promoting awareness and funding world-class collaborative research with an empowered patient community. 

Organization’s strategy: The strategy is threefold. We fund research, raise awareness of this disease and provide education on the latest advancements for all stakeholders most importantly our patients.  

Funding strategy: We are fortunate to have significant funding support from our founders, but like most non-profits tackling diseases time is our enemy and advancing research towards meaningful therapies quickly requires capital.  We have built strong partnerships with leading organizations such as the Leukemia, Lymphoma Society and Alex’s Lemonade Stand Foundation. Together with their contributions we have funded over $6 million in research grants.  A core objective of our fundraising strategy is to diversity our revenue streams. We have obtained funds through grassroots social media campaigns, grants, individual donations and our RRP shop. 

What’s changing at your organization in the next year: We’re growing. Our clinician and research community, as well as our patient community has expanded significantly over the last 12 months. When I first started in October of 2018, we had less than 10 families that we we’re aware of and who we were engaged with. Today we have well 70 families in our community and we continue to grow our patient community. We know there are many more families out there. One of the struggles we have is language barrier, because this is not a disease that discriminates based on your country of origin. We’re doing our best to start building relationships within Europe. We’ve built an EU consortium and we’re starting to expand.

Management Style
Management philosophy It reflects my own core values, which are grounded in trust and respect, open communication, and a commitment to purpose.

Guiding principles for running an effective organization: It links up to this concept around management philosophy and my core values. It’s important as a leader to maintain authenticity. Then making sure that those values are transparent to those that you’re working with. This is critical to implementing a solid business strategy. What do I mean by that? It’s knowing how to develop a business strategy plan and thinking through how you communicate your goals. How you prioritize your goals and then outlining how to achieve those goals. Even though we’re a very lean organization, we have our eye on measuring success and that’s important. You have to have a business plan.

Best way to keep your organization relevant: The best way to keep an organization relevant is by listening to what your stakeholders need and doing what you can to fill those needs either directly or indirectly.

Why people like working with you: I’ve been told I’m optimistic and energetic. I bring enthusiasm to our mission and our purpose. I hear people say I am reliable. If I say I’m going to do something, I’m going to do it. That brings a lot of comfort to people who work with me.

Mentor: I’ve been lucky. I’ve had lots of mentors over the years. I stay connected with most of them and I’m forever appreciative of their support. I would say today I lean heavily on a few. Dr. Nancy Speck, who I mentioned earlier, who is the chair of our scientific advisory board. She’s just a wonderful human being, but also a brilliant scientist and has been incredibly supportive as I navigate this new role. Michael Hund, who is the CEO of the EB Research Partnership. He is my official mentor through the Milken Institute Faster Cures LeadersLink program. He’s been incredibly helpful because of his venture philanthropy experience, a business model we are pursuing as an organization. And then finally, Dr. Lee Greenberger, who is the chief scientific officer of the Leukemia & Lymphoma Society. He has also been a true guidepost for me as I navigate this leadership role.

On the Job
What inspires you: It’s not what, but who inspires me, Tim and Monica Babich. They see no boundaries in anything that they set out to do. They’ve truly infused that mindset into the organization and into me as their chosen leader. It’s incredibly encouraging and motivating to work with people like them.

What makes you hopeful: I would say our patient community. They have such belief in what we’re doing and what the research community is doing. And that hope is infectious. I’m grateful for that, especially on the tough days.

Best organization decision: Hands down that’s hiring Amanda Eggen. She’s our patient engagement and clinical program manager. I spent a good six months looking for her and she’s just been so instrumental in building our patient community and empowering their voices. Without her, we wouldn’t be where we are in terms of our impressive patient community.

Hardest lesson learned: The hardest lesson learned is raising funding for a rare disease organization. Now with COVID-19, it’s become even more challenging. It did not really come as a surprise, nonetheless it’s still not easy to swallow.

Toughest organization decision:  I’ve got one pending decision that does keep me up at night and that’s regarding a registry. There are so many different approaches to building a registry.  I understand the criticality of a registry and perhaps that’s why it’s been such a difficult decision.

Biggest missed opportunity: Fortunately, I can’t think of a “big” missed opportunity.

Like best about the job: I enjoy meeting all the different people I get to meet and bringing all those different stakeholders together to tackle this disease. I enjoy the different perspectives of basic scientists, translational researchers, physicians, genetic counselors, and of course patients. It’s working with a diverse community, that I thrive off of. 

Like least about the job: I probably spend several hours a month writing follow-up emails.  Keeping RUNX1 top of mind is a big part of my job. It’s a lot of chasing.

Pet peeve: Naysayers. 

First choice for a new career: I’m truly happy where I am today. I’ve been fortunate the way in which my career has made all these different twists and turns.  Biology is in my core, so if I weren’t in healthcare it would be out in the field as an ecologist or environmentalist.

Personal Taste
Most influential book: Man’s Search for Meaning by Viktor Frankel

Favorite movie: I enjoy watching movies with my husband at home on the weekends. We recently watched Eurovision and having spent summers in Europe growing up, the music was spot on.

Favorite music
: I have an eclectic music taste which includes electronic dance music.

Favorite food: I love any type of fresh, Austrian bread baked in my mother’s hometown called Going am Wilden Kaiser.

Guilty pleasure: Red wine and dark chocolate on a weeknight is a treat.

Favorite way to spend free time: Outside at the beach or in the mountains with my husband and two sons, who are almost six and eight.




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