The Woman (And Story) Behind “Locks of Love”

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Speaker 1: And we’re back with Our American Stories.

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Speaker 2: If you’ve never donated your hair to the nonprofit charity Locks of Love, it’s likely you know someone who has. Locks of Love is based out of West Palm Beach, Florida, and is known internationally for providing hair prostheses the children and young adults suffering from hair loss. Do you know the reason behind why Locks of Love was started? Here to tell the story as the founder, Madonna Kaufman.

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Speaker 3: When I was in my early twenties, I was an open-heart nurse at the time in Louisville, Kentucky, and I experienced hair loss. The known treatment at that time was steroid injections in your scalp. I got the treatment; my hair kind of came and went off and on for nine years. And then in nineteen ninety-seven, ninety-eight, my daughter, that was four and a half years old, started to lose her hair, and I knew exactly what it was because of my medical background. Alopecia Areata has no known cause and no known cure. It’s an autoimmune disease, and it can come and go throughout your lifetime. It has varying degrees. You can lose a spot here and there on your head. You can lose all of the hair on your head and your eyebrows and your eyelashes. And it really affects children and adults, for that matter. But we focus on children because for that to happen to them when they’re going through their developmental years really forms the kind of adults that they will be. So they need something that gives them security and self-esteem. And my daughter, that was four and a half, I got her treatment, and her hair came back over a period of about a year. So the recovery of her, as opposed to my recovery, was the inspiration behind Locks of Love. I liked to say that I probably should have got the message the first time, that maybe this is what I was supposed to do, but I didn’t. And then when it happened to her, I got the message that, you know, you’ve been lucky twice, and you should pay it back. I went out to several companies to test their product, to see what was the best hair replacement product that I could offer to the children. And at the beginning, it was actually a little tricky because we had no office, we had no staff; hair donations were sparse. I had boxes of ponytails in my garage. Unfortunately, the media embraced what we were doing and got the word out, and I have to attribute their telling the story over and over to the fact that we grew as exponentially as we did. I eventually got a office space donated through a local hospital, so we saved money on rent. We didn’t have to pay rent for several years, and then as time went on, we were able to acquire our own space and have our own office, which is where we are today. I never imagined it would turn into this huge snowball that it did, and we’re pretty much known internationally at this point. We aim to help any child that’s living daily with medical hair loss. Today, probably eighty, seventy-five to eighty percent of our recipients have a diagnosis of some degree of Alopecia, and the other twenty to twenty-five percent are cancer survivors. We have kids that have been through fires that had burn or trauma to their scalp, that their hair won’t grow back. We have children who’ve been a victim of dog attacks. We had a child years ago that was attacked by a mountain lion and essentially scalped. So these kids that don’t have haired, they don’t want to go to the mall, they don’t want to go to the movies. Some of them are homeschooled because they’ve been bullied at school, or simply because they just don’t want to stand out. So, coming from the mother of a child living with Alopecia, I can tell you it affects the parents and the siblings. It affects the whole family because, you know, you get defensive. You don’t want anybody upsetting your sister, or your brother, or your child. This is the time that who they’re going to be as adults is cemented. So we don’t want them to be sad, or depressed, or afraid to go out in public and interact with their peers, or strangers, or adults that might, a, oh, you know, “I’m sorry that you have cancer,” or, “How, you know, why would you cut your hair like that?” Those kinds of sometimes even innocent questions really upset the child and the family, and it’s something that a child shouldn’t have to deal with. So if someone is wearing a wig, it requires double-sided tape or glue to hold it in place, and you can’t get it wet. That would not suffice to give to a child who’s worried about it falling off on the playground or, God forbid, a bully on the school bus pulling it off. So we elected to provide a prosthesis to these kids. Each child receives a kit at home. It’s got all the information and the tools they need to make a mold of their head. So that comes back to us, and we provide that to our manufacturer. That creates a head block for them to make the hairpiece, so it’s silicone. So these prostheses are very, very sophisticated. They’re made by hand. Sometimes we’ll get hair that’s been cut in a salon or a barber shop that’s been swept off of the floor. Unfortunately, that renders the hair donation unusable to us because hair shaft have tiny microscopic barbs on them. So if we use a hair and it’s implanted in a prosthesis upside down, it can create a tangle that no one could ever cut out. So we have to know the direction that the hair was growing in. Thus our requirement that it’s bundled in a ponytail or a braid when we receive it. Because two inches of each hair is lost in the silicone. Base of a prosthesis we require the hair to be at least ten inches. It’s tinted to match their complexions, so it looks like a scalp. It fits on like a glove. It can’t be pulled off or fall off. The seal has to be broken simultaneously at the temples. They can swim with it on. They shower and shampoo their hair just like you and I. So they’re not afraid to go to sleepovers. They’re not afraid to go swimming in the pool. They’re not afraid to ride a roller coaster or be on the gymnastics team, all those things that kids do get involved in and should be involved in. So, because they’re so sophisticated and they’re made in steps from a mold of the child’s head, they get a wig to wear while they’re waiting because I can get that to them, you know, quickly, in less than two weeks; but the process of manufacturing the prosthesis is four to five months. Seeing that smile come back to a child and seeing they want to go to school and they want to be involved, it just changes everything for the whole family, and it makes a tremendous difference in their developmental years, because unlike adults, children are very resilient, and once they get their prosthesis, they’re right back in the game. You know. The boys are on the football team; the girls are on the gymnastics team. They’re going to sleepovers. Some of them don’t even tell their friends are the new people that they meet, that they don’t have hair, because as far as they’re concerned, they do have hair.

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Speaker 2: And we’re listening to Madonna Kaufman telling the story of how Locks of Love was founded. And, of course, it started with the personal, like so many of the great ideas. And we do a lot of entrepreneurial ideas on the show and innovators, and sometimes they’re for profit, sometimes they’re nonprofit. Sometimes their combinations are great. Hospitals are nonprofits with for profits bungled up inside them. And it all started with Madonna and her own daughter suffering hair loss from Alopecia, and so she went about trying to figure out how to solve this problem for kids — to self-esteem problems it cost, the confidence problems it cost — and in the end came up with a really smart way to let kids become kids again and not worry about being bullied. When we come back, more of Madonna Kaufman’s story — the story of how Locks of Love started — here.

00:09:24
Speaker 1: On Our American Stories.

00:09:39
Speaker 2: And we’re back with Our American Stories and the story of Locks of Love, the nonprofit charity that provides custom-made hair prostheses the children suffering from hair loss. And we’re hearing from the founder, Madonna Kaufman. He’s just told us of the intricate process that takes place in order to create the hair prosthesis for each child. Let’s continue with the rest of this story.

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Speaker 3: During the first year in nineteen ninety-eight, there were nine recipients. Those kids are now in their thirties, so they’re our alumni. I’ve been doing this for about twenty-four years, and I remember the faces that first year because it was such a small group, and we were so happy with the thrill that we got from watching them change their daily routines and get back in the game. From that first year, we had a recipient that was twelve years old, and she had a lot of self-confidence even though she had no hair at all. She had no eyelashes, she had no eyebrows, and when she got her prosthesis, she was one of the happiest kids. She sent us pictures; she did braids, she did ponytails; and she would always send us pictures and a thank-you letter throughout the years, because once you’re accepted in the Locks of Love family, these kids get a new prosthesis every two years until they turned twenty-one. So, over the years, we could watch her grow up. And when she got to be about sixteen, she decided to enter a beauty pageant. She sent us pictures from every aspect of the pageant. But when she was ready to do her talent, she dressed up as a genie, and she did a dance, and she did that without her hairpiece on because she had had a few years to wear the prostheses, and she developed so much self-esteem and self-respect that she had the confidence to do that, and she won the pageant. Believe it or not, we have quite a few sets of twins. Sometimes both twins have Alopecia. More often than not, one twin does, and the other doesn’t. So we have great stories about a twin who donated all of their hair to the twin that had Alopecia. And although it’s really takes ten to twelve ponytails to make one prosthesis, and we can’t follow every ponytail to see, you know, who’s getting whose hair. If we have a situation like that, and we have had, we make sure that ponytail goes to the manufacturer with the twins’ name on it. And then that really — as if twins aren’t close enough — that really binds them together. And it’s an example of the win-win because the one twin sometimes feels guilty that they’re not the victim, and that helps to leave some of their — I think it’s called survivor guilt. In a way, it helps to relieve them of the fact that if, gee, it happened to my sister and it didn’t happen to me, but look what I did to share in what she’s going through. And each time it’s a happy ending. You know, it’s a very, very popular thing for kids to do, and once they’ve done it once, it’s very, very common for them to grow their hair and donate over and over and over. It’s a big thing for high school seniors to cut their hair before they go to college. It’s another big thing for college graduates, you know, that are getting out into the workforce to say, you know, “I need to have professional haircut.” “I can’t just have this hair all the way down my back.” Amazingly, people that have been diagnosed with cancer, and they know that they’re going to lose their hair to chemo, are so unselfish that they will cut their hair and send it to us before they lose it. So it’s just amazing to see what big hearts people have that they would think, think of someone else, even when they’re in a situation like that of cancer diagnosis. They would think of someone else before themselves and do something for someone that they’re not going to get to meet. Many celebrities have cut their hair for us over the years. One of the earlier celebrities with Sammy Hagar, a hard-rock guy from the eighties, Sean White, who was a snowboarder on the U.S. Olympic team, cut his beautiful red hair for us about five or six years ago. We actually had an astronaut on the International Space Station cut her hair and send it back on Space Shuttle. So we like to say we’re not just international now, but we’re intergalactic. You know. They get to choose the color and they get to choose the style because when, and they receive it, it’s long and it’s all one length, so they have to get it cut while they’re wearing it so that it complements their features. It’s interesting how they mix it up. Many of the girls will change from year to year when they get a new prosthesis, they decide they want to be a blonde this time, or, you know, auburn hair is very popular right now, and we don’t get a lot of red hair donations, but many of them do go from being a blonde to a brunette to an auburn. So they do have a lot of fun with it. Once they get confident and their self-esteem back, then they mix it up a little. A lot of people do think that there are satellite offices. There are chapters in different states and around the country, but truthfully, there’s one office in the whole wide world, and that’s here in West Palm Beach, Florida. And we do have a full-time staff of five, and fortunately we have lots and lots of volunteers that we couldn’t possibly do without. Thousands, if you consider the hair donors volunteers, and I do, and we could never have done any of it without them. Every ponytail comes with a story, and it’s very rewarding for us to see how much the donors get out of giving their hair to someone that they’re never going to meet. And many of those donors are children, so it is a win-win. Everybody gets some self-esteem out of doing something good as well as being a recipient of someone’s good deed. It’s hard to get the mail opened because everybody stops to read the letters that come with the ponytail, and we have one wall in the mailroom that’s pretty much plastered with letters that come from children. You know, that some of them might be written in crayon from a very, very young child. Some come with a whole booklet, a whole story about my haircut and the child that’s going to get my hair. And it’s just incredible to walk through our office and see a lot of the stories, and we read every one of them, and working at Locks of Love is really, really rewarding. You or I can go out and volunteer at a food bank, or we can go do a 5K or something of that nature, or we can even write a check and send in a check to donate to a nonprofit organization. But this is something that a little child can do, and it’s not just spur of the moment. They don’t just decide, “Oh, I’m going to cut my hair.” A lot of them have to spend months, sometimes over a year, to grow their hair long enough to donate, so they’re focused on it, and they have to spend time doing it. And there’s not a lot of things like that, if you think about it, that a child could do to volunteer or to be philanthropic, and it really is being philanthropic and teaching them from a young age to give back. I never imagined in one hundred years that we would be able to help thousands and thousands of kids, and we have over the last twenty-four years. We have children in all fifty states and across Canada that our recipients of Locks of Love. We have some children that applied when they were four and five years old, so they might have up to seven or eight prostheses by the time they turned twenty-one. It’s almost, I feel like, they’re almost my kids, because they’ve been sending me pictures and thank-you notes for, you know, sixteen years. We’ve never had a waiting list. Thankfully, we’ve never had to ask a child to wait, and I hope we never do. And for me, you know, I’m a volunteer. I don’t get paid, but it’s one of the most rewarding jobs that I’ve had, ever had, because the thank-you notes that I get and the after pictures, because we love to get before and after pictures, it’s just so rewarding. And I hope that, and I think that I’ve made a difference in the life of every child that’s been a recipient of Locks of Love, because I know what it can do to the child and to the family, and anything that we can do to leave a little bit of that stress and heartbreak is very rewarding for me. And I’m very proud of what we’ve been.

00:19:32
Speaker 1: able to do. And you should be.

00:19:38
Speaker 2: And we’re listening to Madonna Kaufman, founder of Locks of Love. A terrific job on the storytelling by Madison Derikutt. And this is so typical of what Americans do. They solve problems. And sometimes a for profit solves a problem: feeding people, solving a technology problem, a service problem. And sometimes it’s a nonprofit solving a problem. And as she said, she’s helped thousands of kids get over their hair loss issues and get them back into the world and into life — the story of Madonna Kaufman, founder of Locks of Love.

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Speaker 1: Here on Our American Stories.