Rare Leader: Stacie Lindsey, Founder, CEO, Cholangiocarcinoma Foundation

The Basics
Name: Stacie Lindsey

Title: Founder and CEO

Organization: Cholangiocarcinoma Foundation

Social Media Links:

Disease focus: Cholangiocarcinoma (CCA) is a rare cancer that starts in the bile duct, a thin tube that reaches from the liver to the small intestine. The major function of the bile duct is to move bile from the liver and gallbladder to the small intestine to help digest fats in food.

Headquarters: Herriman, Utah

How did you become involved in rare disease: In late 2005, my brother ran the St. George marathon and had some stomach issues. They didn’t subside after he ran the marathon and they diagnosed him with stage four terminal cancer. He was 38 years old and was about to have his fourth child. He gathered the family together to tell us. When he announced to the family that he had cholangiocarcinoma, we all burst into tears and then I said, “How do you spell it? What did the doctor say?” My mind could not accept this was a terminal cancer. He was healthy and strong. I went home and got on Google looking for anything I could find. He immediately quit his job. He wanted to spend the time he had left with his wife and children. He asked me to manage his medical care. I was doing all the cancer research, talking to doctors and researchers across the world. Another sister was in charge of researching nutrition, and another was in charge of researching alternative therapies. Our family would come together on Sunday evenings and talk through what we found, and Mark and his wife Marianne would decide what to do next. We needed to connect to other families and other individuals. We needed more information and there wasn’t any good information out there. My brother-in-law had some web experience and he put up a discussion board. Mark lived 15 months. He died on January 19, 2007. Before he passed away he asked me, “What are you going to do when I die?” He thought we need to start a foundation, because there will be many people who will need help.  He wanted to do something formal. That’s how we got started. From there it has grown very organically from us as we try to meet the needs of the patient.

Previous career: I was a stay-at-home mom of five.

Education: B.A. in psychology from Brigham Young University

The Organization
Organization’s mission: To find a cure and improve the quality of life for those affected by cholangiocarcinoma.

Organization’s strategy: We have three areas that we are focused on. The first is patient and caregiver education and advocacy. The second is funding research grants and research tools. And the third is collaborative partnerships and funding for our clinical research network.

Funding strategy: Most of our funding comes from individual donations. We started fundraising about six or seven years ago. Before that, families would send in donations. Now our strategy is different. We are partnering with innovative organizations and industry to help patients get access to better care and fill gaps where necessary.

What’s changing at your organization in the next year: One of the things that we’ve tried to do is create basic research tools—cell lines, PDX models, organoids, and get those into a publicly accessible area. That’s going to happen in the next six months. It will make a big difference to have these research tools publicly available. We continue to encourage companies that have an indication in CCA to come into our space. If they are in the preclinical space, we connect them with labs that can help them assess their drugs. If they are in the early clinical trial space, we encourage them to add a cohort for CCA.  Cholangiocarcinoma is a target rich environment, these tumors have a lot of mutations, and a lot of companies are jumping into this space. We work to develop those two streams. We’re constantly trying to pull promising companies in and educate them about the CCA community. We want to get them all of the information and resources they need so if they see any activity in their drug on CCA, we can help them get things rolling as quickly as possible and get better treatments to patients.

Management Style
Management philosophy: Give people the resources, direction, and guidance they need and let them do their thing. It’s different now from when we started. When we started, I did everything. I licked every stamp and addressed every envelope. Now we have a few employees and it’s great to hire good people and give them a vision of where you’d like to see things going and then let them start plotting out a path.

Guiding principles for running an effective organization: We have three guiding values, which are patients first, collaboration, and urgency. We try to keep those in mind with every business decision that we make.

Best way to keep your organization relevant: We have to keep up with the quickly emerging science, which is exploding.  We keep in very close contact with our research network and our medical advisory board. We consult with them often on things that are going on and where we need to be involved, and what we need to look at more closely. We have a conference once a year. That really helps us stay relevant because we’re getting the best scientists, the biggest innovators, and bringing them together as a group to collaborate and figure out how we can take advantage and leverage anything that’s emerging. That keeps us relevant.

Why do people like working with you: We’re a virtual organization and that’s become attractive to people. We’ve just had huge growth in the number of patients we’re serving, the amount of industry that we’re interacting with, and the number of important partnerships that we’re cultivating. It’s a very exciting environment and a lot of people are really attracted to advocacy work.

Mentor: I would say PanCAN [Pancreatic Cancer Action Network] has been super helpful to us. They have shared best practices and we’ve spent days in their offices and hours on the phone with their leadership. They’ve just been so instrumental in helping us get some of the important policy pieces together that we needed to move forward with the organization. I would say for my mentor, I think everybody looks up to Kathy Giusti [Multiple Myeloma Research Foundation]. She’s one of the titans of advocacy, where you’ve seen a relatively small cancer that had no treatments, in a very short time period of time have all kinds of treatment options available to their patients with the patients living longer. I think everyone admires someone who can make mountains move in that way.

On the Job
What inspires you: The patients for sure, and specifically the patients who volunteer for us. Patients who are suffering physically, emotionally, and some financially who are volunteering to help others when they are in need themselves. It’s just, it’s amazing to see them. It is so inspiring to see them reach out to others who are in need when they are in need themselves.

What makes you hopeful: This young generation of researchers that are coming up and are so innovative and very collaborative. They are used to crowdsourcing information and doing things that were not done in earlier generations. Information, data, and research were very siloed. Early on, I didn’t see any way we could this without collaborating and this generation of researchers are very collaborative.  I think it’s going to make all the difference.

Best organization decision: The best decision was to hire our first executive director. That was a dream for me. She is amazing. I could dream big and she could take care of the details.

Hardest lesson learned: The hardest lesson I have learned is that you should never be in a hurry to hire someone because you need someone, it is very important to take whatever time is needed to make sure you find the right fit for your organization.

Toughest organization decision: Going from a small organization where you are making every decision to a growing organization has had some painful moments. Trying to figure out the right organization to fit the needs of the patients in this growing community has been a struggle, but it has also been a blessing to have additional leadership to lead many of the important initiatives in which we are involved.

Biggest missed opportunity: We have a patient registry that is six or seven years old. We’re updating it for the first time but getting it out to researchers who can use that data has been a missed opportunity. We’re just figuring that out now. There’s a lot of rich, deep data there.

Like best about the job: I like the relationship building. Advocating for patients in the regulatory setting, with industry partners, and I really enjoy creating innovative strategic alliances.

Like least about the job: What I like least are the contracts and agreements and the details on all of those types of things.

Pet peeve: Anyone who works for me would say my pet peeve is any kind of grammatical errors in communications.

First choice for a new career: I’d be a race car driver. I don’t follow NASCAR, but I like to drive fast.

Personal Taste
Most influential book: The Road Less Traveled, Timeless Edition: A New Psychology of Love, Traditional Values and Spiritual Growth by M. Scott Peck and Getting Things Done: The Art of Stress-Free Productivity by David Allen.  I also love the classics, Hardy and Dickens.

Favorite movie: I like period pieces like Pride and Prejudice – anything in that genre.

Favorite music: I love 80’s alternative rock 

Favorite food: Fresh fruit

Guilty pleasure: I love reading in the bathtub

Favorite way to spend free time: With my family