RARE Daily

Rare Leader: Ben Munoz, Co-Founders and Chairman, Ben’s Friends,

September 24, 2020

The Basics
Name: Ben Munoz

Title: Co-founder chairman

Organization: Ben’s Friends

Social Media Links:

Disease focus: Rare and chronic diseases

Headquarters: Austin, Texas

How did you become involved in rare disease: in 2006, I had a stroke caused by a rare form of a brain malformation. It was called an arterial venous malformation AVM. And during the process of recovery, I was very lonely. I was very scared and I reached out on the internet and tried to find support groups, other people that were going through the same thing as I was, but I couldn’t really find the support I was looking for. So, I started my own website and my own online support group, called AVMsurvivors.org. Through there I met people that were going through what I was going through and who had already gone through what I had been through. And we developed a great connection, a great support network. It was a tremendous source of information and friendship during those very difficult times for me: the first online community for rare diseases, which eventually became a whole network of  online support communities for rare diseases called Ben’s friends—patient communities and now a nonprofit.

Previous career: Currently co-founder and CEO of Nadine West, a women’s fashion company

Education: B.A in economics from Stanford University, completed two years of MD program at Baylor College of Medicine, MBA in marketing and international business from the Kellogg School of Management at Northwestern University

The Organization
Organization’s mandate: Our mandate is to make sure that everyone with a rare or chronic condition has a safe and friendly place to go and find others like them.

Organization’s strategy: We want to create independent online communities. We want to remain independent so that we can focus on patients. And we do that by keeping our costs low so that we don’t have to rely on support from companies or foundations. We can do everything that we need to by ourselves with the support of our own members, benefactors, and individual donors. We work hard to earn and retain our members’ trust. Every community is focused on only one disease or one condition or family of conditions. We are not a mega-site where every condition is just a folder or a webpage. We realize that every condition is different. We launch separate websites with different logos and different colors for each of the conditions we serve.

Funding strategy: Our funding strategy is friends and family, and members. For the first 12 years, it was strictly friends and family of the board of directors, of the co-founders, of certain members that were active. Recently, we’ve launched a Patreon strategy so that we can be member supported just like NPR, for example. That just launched and it seems to be promising. As long as we keep our costs low and our staff lean, we’ll be able to operate just with those funding sources and remain independent.

What’s changing at your organization in the next year: The Patreon project is new. We are going to be rolling it out in the next three to six months, and for the first time in about five or six years, community homepage redesigns. That’s a big deal. We’re expanding our internship program. We have an internship program for student interns who are generally pre-med or pre-healthcare. We have a high success rate of getting those interns accepted into the medical school or grad school of their choice. We’re going to be expanding that program.

Management Style
Management philosophy: We’re only focused on patients. We don’t have any full-time staff. Everyone does this part time. Both of our executive directors are retirees and have one of the rare diseases in our community. One is a retired teacher and the other is a retired surgeon. They’re at a point in their lives where this is not a career for them. They just want to give back and they want to do whatever is necessary to help others in their same situation. And everything we do is focused on patients.

Guiding principles for running an effective organization: Question everything: “Do we really need this expense? Do we really need this position? Do we really need this project?” If you eliminate anything that’s not a resounding “Yes,” you reduce your effort to only the essentials. And if you do that, you can get so much done with little budget and resources. And that’s one of the things that we pride ourselves on. There was a Harvard Business Review article about Ben’s Friends, and I believe the article title was “Big Impact on Small Budget.” It highlighted our ability to have this massively successful online community, competitive with Patients Like Me, which has raised millions of venture capital money. We decided we’re not going to go down that path. We would do a nonprofit, but how can we have a big impact on the rare disease space with our limited resources? I think we pulled it off. I think we did a really good job. And then we were featured in Harvard Business Review for having done that.

Best way to keep your organization relevant: The best way to keep the organization relevant is focus. Ignore the non-essentials. Don’t focus so much on what others are doing because that’s sometimes a distraction. Focus on what our patients need and what’s going to improve their lives. If you know that, then everything else will take care of itself.

Why people like working with you: Integrity. I think it’s clear that we have no hidden agenda. There’s no money to be made here because we’re a nonprofit. I have never taken any salary. I’ve only donated money. Our intentions are pure. We’re run by patients for patients and people understand there’s no agenda here. The only agenda is to fulfill the mission, which is to provide warm and friendly support communities for rare disease patients.

Mentor: I read constantly. With a library card, you can have the best mentors in the history of civilization.

On the Job
What inspires you: Whenever I hear from patients about what a difference our patient communities have made in their lives. That makes it all worth it.

What makes you hopeful: That we’ve made it this far. We’ve been at this for 13 years already. We’ve seen a lot of other similar startups come and go. We’ve had the staying power, and this is the best team that we’ve ever had. Our bank account has been teetering on zero for many years, but now it’s not. I think we’re doing a good job and we’re much more stable than we’ve ever been.

Best organization decision: Early on we were wondering what we should do. I’m a startup founder and my co-founder is a startup founder and we wanted to help people. We were thinking, we should we go out and raise money. And then we realized, well, if we do that, we make promises that we have to raise revenue and they will half-heartedly agree and support the mission. But the primary motivation is going to be a good return investment. We decided to just simplify things, file our paperwork to become a 501C3 nonprofit. Then it’s crystal clear about our motivation because there’s only one.

Hardest lesson learned: There are times when we tried to take on too many projects, and with my co-founder and I also running startups on the side, our execution was lacking. The lesson learned was to do one thing. Do it well. Take on one project at a time, execute it well, and do not dilute your efforts into many projects and have them either fail or fade away.

Toughest organization decision: The toughest decision was letting go of previous executive directors. We had a couple of executive directors and they just weren’t good fits. The epiphany was the people who really get this are patients. Let’s try to promote from within. We found moderators who were previously members and patients. They’ve been fantastic leaders and executive directors. We invested heavily in finding our previous executive directors, but once we realized that, okay, we had to bite the bullet and move on.

Biggest missed opportunity: We didn’t start raising money from our members until recently. We always felt like we didn’t want to impose that on our own memberships since they’re dealing with health situations, but then we realized that actually a lot of our members are in the financial position to help, and they’re very grateful to us.

Like best about the job: It gives me the opportunity to give back. I’ve been fortunate in my own experience with my own rare disease and with the company that I helped co-found. I’m grateful for everything that I have. I’m happy to give back.

Like least about the job: What I like least about the job is not having enough time. Eventually, as I start transitioning away from my own company, I’ll be able to spend a little more time. But my time is limited right now.

Pet peeve: The way that we run the organization is a little bit non-traditional. We have always worked remotely. The team is based around the world and getting people to understand how differently we run things. We don’t have a physical office. We don’t have meetings. We don’t do things very traditionally. It’s a little bit of a pet peeve getting people adjusted, but eventually they do, and it works out great.

First choice for a new career:  I wouldn’t change anything

Personal Taste
Most influential book: The ONE Thing: The Surprisingly Simple Truth Behind Extraordinary Results by Gary Keller

Favorite movie: Star Wars

Favorite music
: Country Music

Favorite food: Vietnamese

Guilty pleasure: Saturday morning doughnuts

Favorite way to spend free time: Reading books


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