Rare Leader: Earl Cole, Founder and Chairman, Perthes Kids Foundation

The Basics
Name: Earl Cole

Title: Founder and chairman

Organization:  Perthes Kids Foundation

Social Media Links:

Disease focus: Legg-Calve-Perthes disease (LCPD) is usually not caused by genetic factors, but there are some cases where LCPD affects more than one family member. In a small percentage of these familial cases, changes or mutations in the COL2A1 gene have been found to cause LCPD. LCPD usually occurs in children ages 4-10 years (mean age, 7 years). It occurs more commonly in boys than in girls (male-to-female ratio, 4:1). The condition is rare, occurring in approximately 4 out of 100,000 children. It is not curable because we don’t know the cause. However, it is a self-healing disease, meaning the body is able to heal the bone in the femoral head that is affected. The healing process and the duration of the disease vary from patient to patient. Signs and symptoms of Legg-Calve-Perthes disease include limping, pain or stiffness in the hip, groin, thigh or knee, and limited range of motion of the hip joint. Legg-Calve-Perthes can be treated without surgery, or with surgery, depending on the child’s particular case and severity. If non-surgical treatments prove inadequate, a child may need surgery to hold the head of the thigh bone in the hip socket. Surgery involves reorienting the affected bones (osteotomy) and stabilizing the realignment with screws and plates.

Headquarters: Studio City, California

How did you become involved in rare disease: I had a rare disease called Legg-Calve-Perthes disease when I was a child. It was named for the three doctors who originally discovered it and made it known to the public more than a hundred years ago. It is called Perthes disease for short. It’s a rare hipbone disease, a form of osteonecrosis that affects maybe one out of every 21,000 kids between the age of 2 and 10, but usually it’s discovered around age 6 or 7, which is when it was discovered for me. It is a chronic, painful disease in your hip area where the bone is slowly dying. It has to go through a four-stage process where eventually it heals. It does not heal perfectly for most of the kids—me included. You’re left with this deformed femur or ball of the hip bone socket that can cause irritation and inflammation throughout the rest of your life. A lot of times that leads to either just dealing with it and then, depending on the severity, ending up getting a hip replacement like I did. That’s how I originally got involved in rare disease. I remember the isolation, the loneliness that I had. I had never met anybody in my entire life with this disease until I became an adult. That is how I ended up starting my own foundation.

Previous career: Currently serves as co-founder and CEO of The SMART Tire Company, which develops proprietary technologies for the electric mobility, aerospace, trucking, and transportation industries, using advanced materials and innovative design. We have a Space Act Agreement with NASA, and so get to work on a lot of cool projects.

Education: B.A. in marketing, business administration and management from the University of Washington; completed executive education program in entrepreneurship/entrepreneurial studies at Harvard Business School, executive education at the Sloan School of Management in computer science and artificial intelligence lab, artificial intelligence and implications for business strategy; executive program from nonprofit leaders, entrepreneurship and social innovation at Stanford University Graduate School of Business, doctoral student at the University of Southern California Rossier School in Organization Change and Leadership.

The Organization
Organization’s mission: I would call it a support organization. Our mission is to provide support research, and connectivity for children and whole families that are going through the journey of Perthes disease. We provide educational support, moral support, and things like that. We connect people and this is around the world. Even though we are a California-based organization, we have chapters in other countries, fully established charities in these other countries. We are a global organization that brings everybody together to disperse information, connect them with specialists, and just so the kids can meet each other and not feel alone because it can be a very lonely journey. It’s not a life-threatening disease, but it is definitely a life-altering disease.

Organization’s strategy: Our main strategy is to connect parents with other parents and children with other children, so they can share stories, different medical treatments, doctors—you name it. It doesn’t matter if you live in the United States or if you live in Australia, or Italy. It doesn’t matter. The disease doesn’t care where you live. We find that common ground with this disease and find ways to bond with each other, talk with each other, and use the data from our particular groups and events and different things that we do to research efforts that are taking place here in United States, as well as in the U.K. We get everybody together because it’s such a fragmented disease, because it’s a rare disease. We’re that common glue that allows everyone to connect and talk and share information about what they’re going through, the data behind it, and connect them with the doctors.

Funding strategy: Whoever wants to give us money, we’ll take it. When you’re dealing with a rare disease, you don’t have the benefits of some of the other more common ailments and diseases like diabetes, Alzheimer’s, or even ALS at this point, where they get a lot of the national recognition. When you start dealing with a rare disease, most people only donate to things that directly affect their lives, like different types of cancer. When you get down to these little vertical diseases, it’s much more challenging to raise money. It’s usually someone directly effected in some way, or they just have a big heart. Social media is a big way for us to raise money, doing different fundraisers on Facebook. We do a different camp every year in different countries that raises a little money. Our operational costs aren’t very high. I keep it low because I have to be someone who wears many hats, so we don’t have to pay a bunch of people. That’s our strategy.

What’s changing at your organization in the next year: My retirement. I will no longer be the CEO. I’m moving toward the chairman’s role. I have four different executive directors: Australia, U.S., U.K., and Latin America. I’m hoping that maybe next year is my last year of CEO duties, but we’ll see if the pandemic is kind enough to go away.

Management Style
Management philosophy: My philosophy for managing people is to let people be themselves. Be transparent with what’s going on in an organization—what your plans are, what your vision is. And listen to the members of your organization—the families, the patients, the people you’re trying to serve. Make sure you hear what they want and not just what you want. I try to cater to their needs. I always remain empathetic. Never forget where you come from when it comes to this. I’ve learned from being a part of these larger rare disease organizations that a lot of the founders are usually moms or dads because their child has a disease. I am one of the few people where I actually have the disease. I identify a bit differently and it’s different for me than being a parent with a child who has it. I can just imagine what my mom was going through having this kid with a rare disease and no one to talk to. We had a doctor who had never heard of the disease. I’m sure it was a pretty crazy journey for her. I keep that in mind to keep parents as informed as possible and as connected to different doctors as possible.

Guiding principles for running an effective organization: Truth and honesty are always good. Being authentic and caring about the cause and the mission. We’re not in this to get rich. We’re not in this to win a bunch of awards. The goal is to make the lives better for the families that are affected by this disease. The number one goal is to have an impact. Am I making an impact today? Am I making an impact this month? This year? Kids don’t care about your bottom line or fiscal responsibilities. It means nothing to them. They just want to know, “How can I get better? How can I have friends? How can I feel normal in any kind of way?” And the parents want to know, “How can you make my kid feel better? Who can I talk to that understands my journey with this?” That’s the real, nitty-gritty about what we do, and you have to care about it. That’s how you make the organization remain effective and authentic. Keep that mission in mind.

Best way to keep your organization relevant: Stay updated with all the current research and information that pertains to the rare disease your organization represents. Also, make sure your organization is easy to find on all social media platforms and digital forms of communication. Make sure that your organization stays focused on its mission, but also focused on the patients and people that you’re trying to help. Be fun, be active, be real. That’s how you can touch more lives and stay relevant to your cause.

Why people like working with you: I’m very real and I think parents look at me as a way to communicate with their child. Most kids, when they’re affected with this and between ages of 3 and 8, they can’t articulate what they’re going through, and the parents don’t know what questions to ask. I’m able to explain what the kid might be feeling. That’s why a lot of parents look at our organization and say the head of this organization went through what my child is going through. I give them hope. Your child might be going through this but look what he can become. They can still do all these things. Hopefully they look at my life and say, “He’s been successful in various different platforms and different ways. All is not lost. It sucks my kid doesn’t get to play little league, or suburban soccer, and all these little things that I wanted him to have for his childhood, but there are other things that they can do in spite of that. And they can still be very, very successful in life.” 

Mentor: My greatest mentor will always be my mother. She passed away a few years ago but her wisdom and integrity are forever ingrained into my heart and soul. She is my original Perthes mom. She learned everything she could about this disease from medical books when I was a kid, before there was an internet to search on Google or join a Facebook group for moral support. She was completely on her own and alone on this journey to find help for her son. I will always remember all that she did to make my life as normal as possible. She let me be me and be proud to be me: rare.

On the Job
What inspires you: There’s the mission itself. That’s always inspired me, but I have this titanium reminder in my hip every day about where I come from and why I walk a little funny sometimes. You have all kinds of little reminders in your life about what you went through having a rare disease. It shapes who you are as a person. I always say it makes you a stronger person, a more empathetic person.  I relate to people in a different way. I connect with them in different way because of it. I was in the sitting position of a wheelchair for two years. As a kid, you learn observation skills pretty early on, and how to talk and manipulate certain situations based on your situation. It is a forced education you have to have. Even with people looking at you saying, “Oh, what’s wrong with him?”  Having to deal with that at an early age, those kinds of challenges develop you a certain way. It definitely makes you more empathetic towards people who have differences.

What makes you hopeful: The work that we’re doing with the international Perthes study group, which is a group of international doctors that specialize in Perthes disease. We are them. There is still no known cause or cure, but we are providing data points for that based on our global base to help them with surveys. I was actually a co-author on one of the papers that will be published. It was my first medical paper, which was cool. Through the decades I’ve been doing this, you just become an expert on many levels. I’m not a doctor or anything like that, but you learn a lot of medical terminology. You look at your situation and you listen to what the doctors say, 99.9 percent of the time unless the doctor specializes in this, they don’t know what it’s like. We’ve inspired kids to become doctors now because of their own condition. They want to find a cure. That’s the overall goal.

Best organization decision: I would say expansion is probably the best decision. I never thought small about this, and it all probably ties to how I grew up. I grew up in middle America in Kansas. I wasn’t exposed to a lot of different things, but life presented itself to me in certain ways. I went to college in Seattle, got a job in California. I started seeing all these different things and I had the fortunate opportunity to be on television [a winner of Survivor season 14], which  opened up a whole other world to me on a global scale. When I started this organization, I was already thinking that this has to expand across the world to connect everyone. That was one of the biggest things we’ve done—expand into other countries.

Hardest lesson learned: Some parents can be pretty demanding, or they can be a little too coddling of their child, which might not necessarily be good for the child. Parents are trying to figure it out. That can cause some challenges at times, being that we run a camp every year and we have dozens and dozens of kids come from all around the country, and even the world to our campus. It’s the only one that exists. That can lead to a lot of challenges, but it took a few years for us to figure out the right format. We finally got it together and it flows well and is very successful, but there’s always one new parent who doesn’t quite understand what we’re doing, and they have their own parenting style that might not fit with what we’re trying to show their child. I take those challenges in stride and it’s always a learning lesson for all of us, but the overall goal is the kid to have the best time of his life.

Toughest organization decision: Stepping down is a tough decision. A lot of people don’t know that I’m even doing that. I’ve been the heart and soul of this organization from its beginning. My success has helped with the expansion of the organization, but I am only one person. I cannot do this forever because I have other interests. I have my own kids. Before I was single. When I started this, I didn’t have kids. Now I am married with kids. It’s much more challenging to do this. Flying to London or flying to all these other countries to set up different events—I just can’t do it. I don’t have that kind of time because I have to be a dad now. I have a soon to be four-year-old and a two-year-old who need my time more than a lot of the camp kids. I know they would like to see me at the camp, but that’s going to be a tough decision walking away from that.

Biggest missed opportunity: Never getting in touch with Fred Smith. Fred Smith is the co-founder and CEO of FedEx. And he had Perthes disease as a child and never met anybody with Perthes. I have not been able to get in touch with this guy since I started the organization. He shouldn’t be hard to get in touch with. I feel like if we could get in touch with him and say, “Here are all these other kids. They were just like you, and now you see I created the first charity ever for this.” I would love to show him that. If he could speak to the kids one day, it would be just fantastic. It would show a parent what you can do even with Perthes. You can go on and create the largest delivery service that ever existed. 

Like best about the job: The impact and knowing that I am making a difference, knowing that I am giving back to other kids and their families. I am giving them something that I never had. I never had any connection to any other kids. I never knew anybody else with Perthes my whole childhood. The fact that I have eradicated that situation means a lot. We’ve been doing this for so long, they’re basically graduating out of the program. They don’t know what it’s like to be by themselves. I feel that’s great. They didn’t have that lonely journey that I had, and my mom had. These parents are good friends. These kids become best friends from seeing each other at camp. We created this virtual map. You can find anybody on planet earth that is registered with our locator, and you can connect with them anywhere, no matter what country they’re in if they are signed up. You can find them, contact them, and be in touch with them. It’s like having a virtual pen pal.

Like least about the job: All the hours needed for fundraising. I never enjoy that part. It’s always tough asking people for money. When I started this organization, I funded it myself. I used my prize money from Survivor to pay for pretty much everything for the first several years. I cannot keep doing that as we continue to grow and grow and grow and the budget gets bigger. Fundraising is always challenging.

Pet peeve: I love to go to the movies (pre-pandemic). One of my pet peeves is sitting near people who make a lot of noise eating snacks or talk during the movie. It drives me crazy. My wife laughs at me, because I will only focus on that rude person instead of the movie at that point. It’s one of the reasons why I eat all of my snacks before the movie starts. Quiet drinks only for me. I practice what I preach. 

First choice for a new career: I’m still a new dad. I like that. Being financially secure and not have to work would be great.

Personal Taste
Most influential book: Creativity, Inc.: Overcoming the Unseen Forces That Stand in the Way of True Inspiration by Ed Catmull and Amy Wallace

Favorite movie: Shawshank Redemption and Rudy. Rudy wasn’t that great a movie, but I really identified with it.

Favorite music: Jazz. I’m a jazz musician. I play piano and saxophone.

Favorite food: Chicken tacos

Guilty pleasure: I really enjoy watching Korean dramas on Netflix!

Favorite way to spend free time: With my kids. Watching these little slices of yourself is very entertaining. Watching them in their play time and trying to figure [them out].