RARE Daily

Rare Leader: Megan Golden, CEO and Co-Founder, Mission: Cure

December 2, 2021

The Basics
Name: Megan Golden

Title: CEO and Co-founder

Organization: Mission: Cure

Social Media Links:

Disease focus: We aim to find a cure for chronic and recurrent acute pancreatitis. This disease is costly, painful, and patients are at a higher risk of developing pancreatic cancer. Today, there is no treatment for chronic pancreatitis, but there is hope. Mission: Cure is working with researchers, clinicians, entrepreneurs, and industry to develop effective therapies.

Headquarters: New York City

How did you become involved in rare disease: I am a lawyer by training, and I’ve worked in the nonprofit sector for a couple of decades. I was helping jurisdictions across the country use innovative financing to scale up effective early childhood programs when my brother Eric, who lives in L.A., started getting sick. He had tremendous abdominal pain. He lost a lot of weight, and he wasn’t sleeping. He was getting sicker and sicker. After a few years of misdiagnoses, and a surgery for something he didn’t have, he was finally diagnosed with chronic pancreatitis. We learned that meant his pancreas was inflamed, but nobody knew why. And there was nothing to be done about it except palliative care. I had to do something. Eric and I realized that the innovative, outcome-based financing I had been applying to early childhood programs could also bring resources to curing rare and neglected diseases. With encouragement from pancreas experts and leaders in impact investing, I left my job and co-founded Mission: Cure with my brother four years ago.

Previous career: Practiced law, worked in city and federal government, and for nonprofits

Education: A.B. in political science from Brown University, J.D. from the New York University School of Law

The Organization
Organization’s mission: Mission: Cure aims to improve the lives of people affected by pancreatitis by developing effective therapies and improving care. We’re doing this by pioneering innovative financing that incentivizes patient outcomes and that can improve outcomes for all diseases.

Organization’s strategy: We have three main strategies. We accelerate therapy development by mobilizing stakeholders to take multiple shots on goal–the goal of improving specific outcomes that are important to patients in less than 10 years. That includes using cost-effective approaches like drug repurposing and n-of-one trials. Second, we advance patient outcome incentives in the drug development and health care systems. This includes pioneering impact investing as a funding source through a separate LLC that invests in patient-centered therapy development efforts. And third, since people with this disease (and other rare diseases) usually do not get evidence-based health care, we developed and are working to implement a new, interdisciplinary, patient outcome-driven, largely virtual care model where geographically, economically, and racially diverse patients can all access best-practice care.

Funding strategy: it’s a combination of funding from patients and their friends and family, and industry funding when it advances our mission. There’s not that many industry players in this disease. We do a lot of trying to pitch the disease to get their interest. We get funding for patient education through industry. And then third is funding from foundations like the Chan Zuckerberg Initiative.

What’s changing at your organization in the next year: Thanks to the Chan Zuckerberg Initiative Rare As One grant, we hope to bring on a vice president for translational research to make sure that we’re systematically considering all of the approaches to develop therapies and pursuing the most promising ones relentlessly.

Management Style
Management philosophy: There’s a quote from Stephen Covey that I like, which is, “Leadership is communicating to people their worth and potential so clearly that they come to see it in themselves.”

Guiding principles for running an effective organization: One is to think big and start with a vision, not for what could be incrementally better, but what you want the world to look like. Also, focus on doing high-quality, useful work and let that drive the organization.

Best way to keep your organization relevant: The best way is to make a difference in the lives of people suffering from pancreatitis.

Why people like working with you: Because I want to hear the ideas of people that I’m working with, even down to our summer interns. I value their input. I learned a while ago that I’m the type of person that likes to make decisions by deliberating and getting a lot of information and discussing and brainstorming.

Mentor: Ellen Schall, who works in the president’s office at NYU. She was formerly Dean of the NYU Wagner Graduate School of Public Service. I worked for her many years ago when I was in law school at the National Center for Health Education. She’s a brilliant strategic thinker, but at the same time, she takes into account the organizational and emotional context in which decisions are being made.

On the Job
What inspires you: My brother and the other patients we work with inspire me. They are suffering a lot. Chronic pancreatitis is one of the most painful conditions that anybody can have and yet they persevere and they’re always willing to help others.

What makes you hopeful: The willingness of so many people, whether they are scientists, entrepreneurs, rare disease leaders, or pharma companies, to do something to help when they hear the story of the need and what patients are facing. I’m blown away by the accomplished, busy people who are willing to donate their time to help us figure this out.

Best organization decision: Partnering early on with Linda Martin, who is now Mission: Cure’s board chair. She was the co-director for our first three years. Her adult daughter had chronic pancreatitis and she found me online. She has a very different background. I come from the nonprofit sector; she is a serial entrepreneur and businessperson. Having diverse backgrounds working together has been great for the organization and a lot of fun.

Hardest lesson learned: The hardest lesson was when I realized that, aside from Mission: Cure and other patient organizations, there’s no entity in the health care/drug development ecosystem that is responsible for improving patient outcomes in a specified timeframe. There are a lot of committed, altruistic people working in academic research, clinical care, drug development, and even government, but none of these institutions is accountable for improving specific patient outcomes. We need to change that.

Toughest organization decision: I would say the toughest decision was to not focus our organization on providing support for individual patients. We do help patients who reach out to us by connecting them with high-quality providers, information, and other patients, but Mission: Cure focuses its resources on developing effective therapies and improving the care model rather than providing support for a lot of individual patients. We see patients in heartbreaking situations. We don’t have the capacity to help them. That’s very tough.

Biggest missed opportunity: This is not missed, just delayed, but right before COVID, we had some conversations with the Department of Veterans Affairs, which has a disproportionate number of people with chronic pancreatitis. As a single payer healthcare system, the VA has a lot of opportunities to improve veterans’ outcomes by using drug re-purposing and improving care pathways. We had a big meeting scheduled with a lot of senior people in March 2020. Needless to say, it got canceled. One of our priorities for the coming months is to restart that relationship.

Like best about the job: I like the problem-solving aspect of it—working with colleagues, researchers, clinicians, patients, and innovators to understand the disease and figure out how to cure it.

Like least about the job: I would say dealing with fundraising software, tax exempt forms, and state compliance forms—things like that.

Pet peeve: When people tell you what you want to hear instead of being honest.

First choice for a new career: I would be an investigative journalist

Personal Taste
Most influential book: The Checklist Manifesto: How to Get Things Right by Atul Gawande

Favorite movie: I love documentaries

Favorite music
: The Colorado Springs band Tiny Tomboy

Favorite food: Artichoke

Guilty pleasure: Gummy Bears

Favorite way to spend free time: Running. I just did the New York City marathon. Also eating with friends and family.





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