Rare Leader: Jeff Woytovich, Founder, Children’s Alopecia Project

The Basics
Name: Jeff Woytovich

Title: Founder

Organization: Children’s Alopecia Project

Social Media Links:

Disease focus: Alopecia, an autoimmune condition in which the immune system attacks the hair follicles and causes hair loss.

Headquarters: Wyomissing, Pennsylvania

How did you become involved in rare disease: I have four daughters and my second oldest started to lose her hair when she began kindergarten. Within the first two months of starting school she lost all her hair. I was looking for some type of support group that was more devoted to the child rather than devoted to wigs, treatments, and cures. I just wanted her to be as well as she could be today. I wasn’t worried about tomorrow. I just wanted to make sure that she knew that she was perfect exactly the way she was.

Previous career: I worked in the nursing home industry as an administrator.

Education: High school graduate. Enlisted in the Marine Corps and took some college classes.

The Organization
Organization’s mission: Our mission is to help any child in need who is living with hair loss due to all forms of alopecia.

Organization’s strategy: Our strategy is to raise awareness more than anything, but it is also to make sure that if there is a family searching for something and they’re not getting what they want, that we are able to fill that void. Sometimes, you’re totally out of control with alopecia because it’s kind of an invisible disease. There’s no pain involved. There’s really no medication. There’s nothing. You’re hopeless, except for the visual of the child losing her hair. As a parent, you can’t do anything about it. So instead of picking the easy route, which is to cover it up and hide it, we want the kids to feel perfectly normal the way they are. If they choose to want to wear something, that’s great. We just don’t want them to have to wear something.

Funding strategy: From our families who participate in all of our CAP Kid groups around the country and the world and different initiatives. We have the CAP to You speaking tour where I speak in more than 65 schools every year. We have six camps around the United States. Our largest one in Maine is called Alopeciapalooza. The second largest in Malibu is called Calipalooza. And then we have CAP Kid camps in Washington, Colorado, North Carolina, and Ohio. We plan on adding two more in the next year or two. In addition, we have CAP 5Ks and different initiatives where we are raising money. Most of it is very grassroots. We are not looking to raise a lot of money because we are not raising money for research. We’re just putting it to support the things that we’re doing, which is to help kids understand that they’re perfect the way they are. They’re totally normal and they’re different. And that’s why they are normal.

What’s changing at your organization in the next year: We’re becoming a little bit more structured. We hired an office administrator who will take care of all the paperwork, thank you letters, and organize all the things we do. That’s a burden that’s taken off of me. We’re also going to be hiring a regional program director. This person will be in charge of helping the groups program their get-togethers, and also to do the same thing with the camps. I think I’ve done a good job and our volunteers have done a good job. But what we really want is a clinical master-level therapist who will be able to incorporate good sound tactics that will benefit the kids. No matter what we’re doing, it’s going be fun, but there will also be an element that’s going to help their confidence and self-esteem without them even knowing it.

Management Style
Management philosophy: I’m going to make it work for somebody who can’t financially afford it, for somebody when it comes to the distance of an activity, we are always going to make it work. I guess one thing I always say ad nauseum is that if plan A doesn’t work, there’re 25 more letters of the alphabet. If I was starting a business, or running a nursing home or assisted living facility, this is not how I would do it. But it’s a little bit different of an environment because when somebody calls, they talk to me and it makes them feel special. Not that I’m special, but “Oh my gosh, we’re talking to the founder.” What it does, it really incorporates the fact that I want people to know that we are invested in helping the kids with alopecia and their families. I don’t want it to be a corporate structure. I don’t want it to seem stuffy. I don’t want there to be all these you know red tape-situations that people have to get through. Pretty much, we’re just going to say “yes” or “no,” and if we can make it work, we’re going to make it work and go to the next thing.

Guiding principles for running an effective organization: You have to be totally invested and relentless and you have to follow the mission.

Best way to keep your organization relevant:  You have to evolve. If we keep on doing the same things, then we’re just going to keep doing the same things. The people who have already done it won’t want to continue doing it. Everyone wants something different, so that’s what we do. Even when we’re doing something like Alopeciapalooza that we started back in 2009, every single year we’re offering different things, different speakers, and different perspectives about alopecia. It’s important to do that because we never want to be stale. When it comes to the groups, again, the groups will have more guidance with our regional program director. They’ll be getting different activities and different get togethers that will enhance the group but also secretly get into the heads of the kids that they are absolutely perfect the way they are, and they’re going to change. Change is the most important thing because a lot of times kids with alopecia think their hair is never going to grow back, or if it grows back, they are convinced it’s going to fall back out. And we want to say, “Yeah, you’re right.” It’s going to do that. Not in everyone, but in some. You always have to be prepared for change, but no matter how many times you change, you’re perfectly you.

Why people like working with you: Because I care and I’m passionate about them. My daughter is now 21 years old and I started this when she was 5. I don’t think I ever let up. My daughter doesn’t need this anymore, but there are other kids who do.

Mentor: My grandfather, Carmen. He was illiterate in Italian and illiterate in English. He just instilled in me one simple thing. He wanted me to do good. That’s it. No matter what I did, that’s all he wanted and that’s all I ever tried to do and it’s because of him.

On the Job
What inspires you: What inspires me is seeing a change in the kids—seeing a child who goes to the camp wearing a wig, hat, or a bandanna, and they take it off. The parents come up to me and they say, “Oh my gosh, she has never taken her wig off, or he has never taken his hat off.” And the reason why that’s rewarding is because we put them in an environment where there’s no threat. Everyone has each other’s back. No one’s staring at anyone because they’re all dealing with it. And to put them in a position where they can finally be free, it makes them happy. But then when they go back home, they might have the courage to pick other opportunities to be themselves. And what ends up happening a lot of the times is that I get a phone call, or I get an email and I get rewarded by hearing that stuff. I don’t think there’s any amount of money that can it make someone feel as happy as when they find out that something that they were part of really did change somebody’s life.

What makes you hopeful: I’m always hopeful that somewhere down the road there will be an effective treatment or a cure. That’s where my hope is. The one thing about hope is that if it is all you have you are missing out on everything else that needs to be done. I think about today only. Today is the best possible day you have—not yesterday or tomorrow, but today. I want kids to understand that. They should feel good today. If they feel good today, then hopefully, tomorrow, they can feel the same way. As long as they are not thinking about yesterday, they can be as perfect as they want to be. I have hope that something will change with alopecia, but I’m realistic and I want to make sure that today is what we’re really concentrating on.

Best organization decision: The best decision was hiring an office administrator. I’ve always been nervous about hiring someone because we are a small nonprofit. Our administrative assistant is Sharon Joswiak. Having her on board, she’s able to manage the fundraising part on the website, she’s able to do the thank you letters, and it has allowed me to concentrate more on the camps and speaking in schools and managing the fifty plus support groups we have.

Hardest lesson learned: You can’t take care of everyone. In the beginning, I equated success with the amount of people coming to an event. If we weren’t growing, if we didn’t have more people coming to an event, I thought it was a failure until my wife said only concentrate on the people who are there. The people who matter at any event are the people who are there. The other people who aren’t there, you can’t help them. Concentrate on the people who are there. That was the toughest thing for me to overcome. Once I came into the mindset, it totally changed the way I saw things.

Toughest organization decision: The toughest decision was becoming the director of the organization. When I started this, I didn’t want to capitalize on it. I just wanted to do what we were doing. Working and having a family started to become difficult. The board of directors convinced me that I should do this full-time. I was reluctant for two years. I got to the point of thinking if I got hit by a car, would this continue? The answer was “no.” If I would do this as a job, it would put into place rules and regulations to have specific job descriptions. That way if anything happens to me there would be people who are in the pipeline who would be able to take over or find someone who could take over the organization. I was afraid I’d be judged that I started this nonprofit and was now capitalizing on it. Fortunately, after doing this, I wasn’t doing anything different and nobody cared. I said this is okay, and it allowed me to be more devoted.

Biggest missed opportunity: I can’t really classify anything as a missed opportunity. I mean there definitely are opportunities that we don’t take advantage of. There’s no regret for not taking advantage of those. People have wanted to sell their products, whether their wigs or hats, or some type of “treatment” that is not effective. I’ve had so many of those over the years where they would put a link on my website, and we would get a percentage. We could raise money through selling product. I’ve always refused that unless they could send me three, one-year supplies of whatever it is that works. And if I gave it to three families and it actually worked as they said, I would put it on the website for free. Nobody’s ever taken me up on that in 15 years. Maybe that’s a lost opportunity, but I don’t look at it like that.

Like best about the job: What I like best is that it’s not really a job. It’s just something I do. I wake up in the morning and before I go to bed at night, I’m pretty much involved in something with the Children’s Alopecia Project. It’s more of a lifestyle. It’s just something I eat, sleep, and breathe.

Like least about the job:  There are some people who we are just not going to help. A lot of time parents have a different way of interpreting what self-esteem is and what it means. All too often they want us to give them funds, or raise funds, so their child can buy a wig. Unfortunately, I have to let them know that’s not part of our mission. It’s just not what we can do. Sometimes those families will turn away from us because we’re not helping. It’s sad. A lot of those families will turnaround after they’ve rethought what was going on. Sometimes they don’t. But that’s the hardest thing—letting someone know that we can’t help them with what they think they need because it is not part of our mission.

Pet peeve: My pet peeve is people going to Facebook, sending me messages, and asking me questions when they could just go to our website. I engage with everyone. if I had a dollar for every time I had to type in our website and forward to somebody, I think we could be financially sound just on that itself. It’s a pet peeve. It’s not a big deal.

First choice for a new career: I would still be doing what I’m doing, but I would buy a camp and I would have Alopeciapalooza there, and also open it up to other organizations dealing with kids and self-esteem and confidence issues and I would make sure they had an opportunity to have a camp.

Personal Taste
Most influential book: To Kill a Mockingbird by Harper Lee

Favorite movie: My recent favorite movie is Green Book.

Favorite music: I have very eclectic taste. I can listen to ambient techno music to Bob Dylan and classical.  

Favorite food: I’m half Italian, so I’m going to have to say Italian food.

Guilty pleasure: Tastykakes

Favorite way to spend free time: The free time I have is usually spent with my wife and four daughters. They are my favorite people in the world. It’s tougher now. One just graduated college, one in going into her senior year of college, and one just graduated high school. Those days where we have all six of us together at the same time are going to be more and more rare. I just like being with my wife and daughters.