Shaping the Future of Achondroplasia Care | Kristen DeAndrade
In part 2 of My Hero 360’s conversation with Kristen DeAndrade, she shares why she created the Little Legs Big Heart Foundation, an organization dedicated to building a stronger community for individuals living with achondroplasia and skeletal dysplasia. By focusing on advocacy, mental health, and education, the Foundation is working to improve patient care and family resources. From launching camps and national conferences to creating a free mental health support network, Kristen is helping families and empowering them to make informed healthcare decisions.
Kerri Fitzgerald:
In 2024, you founded the Little Legs Big Heart Foundation. You’re doing this all, I think mostly by yourself. You’re working a full-time job.
Kristen DeAndrade:
Yes.
Kerri Fitzgerald:
Wow. How did you make the decision? Why did you want to start this foundation?
Kristen DeAndrade:
Growing up, when I made the decision to lengthen, I was ostracized from my community. When I was going through all of my spine surgeries, I found strength and comfort in the rare condition community. It was part of my goal. A girlfriend of mine, and she had a congenital limb deformity, but we were both the same age. We called ourselves the big kid patients. At the clinic, we would get all the big kids together just to sit and talk about the crap that no one wants to talk about. We would play games and we would eat pizza, and I drew so much strength from that and then began to question why am I not allowed to be involved in my own community?
Then I realized I had a community right under my nose because our physicians treat a lot of skeletal dysplasia. I started getting them together. I actually worked for another nonprofit prior and started a skeletal dysplasia division for their organization. Then finally, I remember having the conversation with my boss, and he was like, “You want to do too many things. It’s too much all at once.” I was like, “But someone’s got to do it.” My whole mindset was I’ve only got 1 opportunity. I’ve been so close to rock bottom. One life to live. What am I going to do? It’s my opportunity. It’s my chance to just go for it.
Valentine’s Day 2024, the Little Legs Big Heart Foundation became a thing. I can thank 2 people, one of whom is my therapist because she kept saying, “Kristen, I’m so sick and tired of you talking about how there’s so much lack in the community and needs and everything. My question to you is, what are you going to do about it?” I had no idea what I was getting myself into when I started this, but it’s been a dream. It’s been so much fun and a huge learning curve.
Kerri Fitzgerald:
You have an annual meeting you put on, you have a series of camps, Camp Ellellbee, that you put on. Tell me more about what the organization is doing.
Kristen DeAndrade:
Yeah. We started, when we got our 501 (c)(3), I had already started putting together a conference for the other nonprofit. I was like, “I’m not letting all of this effort go to waste.” It was May or June that we got funding, and I said, “Okay, we’re doing this conference.”
In October of 2024, we had our very first Little Legs Big Heart Skeletal Dysplasia Conference. We had 188 attendees, and it was so much fun. It was an opportunity to bring together doctors, advocates, industry representatives, parents, kids, teens, everyone to learn to just have fun. We laughed, we cried, and it was just so refreshing. We had our second annual conference last year, and we actually welcomed 300 individuals. We have our third up and coming, and I’m a little nervous about how many people are going to be there.
[Editor’s note: Register now for the 2026 conference.]
Then last year, we had our first round of Camp Ellellbee. I also had no idea what I was getting myself into when we started that. Thankfully, I have a camp director who is an angel and knows exactly what’s going on, and I just follow suit and go with the flow. Camp Ellellbee is a family camp, all ages. We’ve had infants to parents, LP parents with lived experience who have come to our camps. Last year, we had 6 locations. This year, we have 5. We will be in Georgia, Maine, California, Texas, and Utah.
[Editor’s note: Register for a camp.]
Programming is incredible. There’s programming for everyone. We have everything from childcare to kids programming to teen programming to programming for parents and caregivers as well. I went to camp once when I was a kid. I went to Girl Scout camp and I got horribly homesick. Camp was never really a thing for me, but oh my gosh, it’s a thing for me now and it’s so much fun. We have camp names. We’ve laughed and cried at camp. It’s life-changing.
Camp is free to attend. We also offer travel assistance for our families. It’s just these opportunities that you’re gifted and the conversations that we have. We had Spanish-speaking families in California, and I was able to converse using a translator. It was just, I mean, Mom and I, my Spanish is terrible, but Mom and I hugged and we cried and it just…those connections are so powerful. That’s the whole meaning behind the Little Legs Big Heart Foundation. Again, I said scars or stories meant to be shared, and each individual, each family has a story. In sharing those, that’s where the deepest connection and healing can come from.
Kerri Fitzgerald:
I imagine that community is so valuable to people living similar experiences or raising children with similar conditions. That’s beautiful. You talked about earlier one of the missions being the education for the medical community. What are some of the other missions of the organization?
Kristen DeAndrade:
Mental health has been a big thing for me since day 1. Growing up, and it was our parents’ generation, you learned don’t talk about the sad, the scary, the angry. I suppressed everything when I was going through really hard times. It wasn’t until I was in my 20s, I got into the yoga community and learned that it’s very powerful to talk about these sad, scary, and angry feelings. Not only that, but we all have them and it’s a source of connection. Mental health is so important. Being medicated for anxiety or depression isn’t a bad thing; I’ll be the first to sit here and say. I have 2 therapists, I love them, and I take medication. I’m not meant to go through life just by myself doing it on my own. That’s what modern medicine is here for.
When I started the Foundation, I knew that I wanted to tackle mental health. We started talking about creating some kind of support network. I actually would love to accredit my friend Pam. I’m pretty sure she came up with Emotional Support Network. We’ve created the ESN. I have now 5 licensed practitioners, 3 of whom have lived experience, 1 of whom is involved with Camp Ellellbee, and the other is a mom to a son with achondroplasia. All different perspectives from the community.
Our coaching is free. We stress that this isn’t therapy. It’s coaching. It’s the opportunity for people who feel very alone. Or when the rest of the world doesn’t understand, it’s an opportunity to connect with someone who does understand on a professional level and get some guidance so that you are able to live your best life possible.
The Emotional Support Network launched last month. May was Mental Health Awareness Month. We’ve done a couple different info sessions. Part of it is we do offer the 1-on-1 coaching, but we also offer virtual events as well. We’re offering our first Spanish event at the end of this month. Yesi is our, she’s a licensed therapist, and she lives with diastrophic dysplasia. She’s in California, and she’s going to lead that for us.
To see that come to life I think has been just an enormous win. Last year, I connected with a mom and sister whose son and brother lived with achondroplasia and actually ended up taking his own life. Mental health was a big thing for them. I promised Mom, I said, “I don’t know what we’re going to do, but we’re going to do something.” We’ve been in touch. Mom and sister came to conference last year. It was a challenge, I think, for both of them, but I wanted them to realize that this is still their community, that they’re still welcome. They’ve pledged support to our Emotional Support Network now.
Kerri Fitzgerald:
Wow.
Kristen DeAndrade:
One of the biggest things, I guess, when we put it out into the ethers that we were doing the Emotional Support Network, a lot of backfire comes from, “Oh, well, your funding comes from pharma.” Well, I can happily say that actually our funding for the Emotional Support Network does not come from pharma. Apparently, that’s a really big deal for people. We have a family who is deeply invested in this opportunity that we’ve created for the community.
Kerri Fitzgerald:
Mental health is so wrapped up in physical health as well. We speak to so many people through My Hero 360 where that’s such an important component to address in addition to your physical health.
As part of your work, your Foundation, you get to speak with, meet with a lot of young people living with achondroplasia, skeletal conditions, families, parents. What kind of advice, wisdom, insights do you share with them based on your own personal experience?
Kristen DeAndrade:
Yeah, I think one of the biggest things that I’ve learned, and I can speak almost directly to my brother when I’m saying this, is that it’s not just an individual journey. The whole family goes through it. Parents, caretakers, siblings, grandparents, extended family. I’m not a parent; I never have been a parent, and I can’t imagine the difficulty of navigating an unexpected diagnosis, but what I always tell parents is that you know your child best and get as much information as possible, lean on the community, make informed decisions, talk to those with lived experience.
Siblings I think get overlooked all the time. I try, especially at our conference, we give them a lot of attention. They’re a very valuable part of the journey. I can honestly say, I think that’s one thing that I did not realize when I was a kid going through everything. I have a younger brother, Derek, who’s 6’4″ and wears a size 13 shoe. Needless to say, he doesn’t need limb lengthening. It was hard when I was going through surgery, and I was driving to Baltimore every 2 weeks for my appointments for lengthening. I think to give siblings individualized attention and hear what thoughts they have, because it’s a lot to stick up for someone living in the face of adversity. I think they do it more than we think.
Then when it comes to the kids, the teens, however old they are, I mean, kids are so bloody smart. I’m convinced, I say it all the time, especially when it comes to the medications, I’m like, “You can have a conversation with a 3-, 4-year-old about cause and effect. You’re going to take a daily injection, and it’s going to improve your quality of life.” Doctors will look at me and be like, “They don’t know what you’re talking about.” When you live in the face of adversity and you grow up knowing that you’re different, there’s just this inherent understanding where you grasp things so much deeper than someone of the same age.
My favorite thing is to just instill that power of advocacy into these kids and teens and adults. I mean, I think we pay a lot of attention to kids and I think more attention needs to be paid to the teenagers and the young adults because, man, that stage of life is hard and you’re making a lot of big decisions. Ultimately, they’re in charge. We are the only person we’re going to have for the rest of our lives. We are the one that makes these decisions and that decides our path. We’re not meant to do it alone, and that’s the power of community. I think giving that gift of community to not just the parents, but the individuals and the family members is my number 1 goal, and then just allowing them to develop their own advocacy pathway and whatever they need to feel empowered and do that.
Kerri Fitzgerald:
That’s beautiful. That’s incredible that you created this community, this space. You’re educating people in different areas of industry. Where can people learn more about Little Legs Big Heart Foundation and get in touch?
Kristen DeAndrade:
Our website is www.littlelegsbigheartfoundation.org. We’re on social media. My email is kristen@littlelegsbigheartfoundation.org. I make it a point to touch base with everyone that reaches out. I think that’s very important as the face of the organization, and I want everyone to feel included. Please reach out to us. Again, we’re on social media, LinkedIn. We have our conference is coming up October 29 through November 1. Our camps start in August. They run through October. We’re out there, and we would love to hear from you.
Kerri Fitzgerald:
Amazing. Kristen, you’re a national speaker. You have written a memoir. It is available on Amazon for anyone interested. You’ve founded this incredible organization. You work for your former doctor, now boss.
Kristen DeAndrade:
I do.
Kerri Fitzgerald:
Wow. How do you do it all and what’s next for you?
Kristen DeAndrade:
I don’t know how I do it. I ask myself all the time, “How?” Why? There’s no question as to why. I mean, this is my life. It’s my passion and I’m so grateful that I get to do what I do. It’s hard, but it’s fun, and it’s so rewarding.
I am working on a manuscript for a second book.
Kerri Fitzgerald:
Wow.
Kristen DeAndrade:
I think the publishing company would like to see me work a little bit faster, but working 2 full-time jobs is very difficult. We’re just really looking forward to camp this year and to conference, growing our Emotional Support Network, and really seeing if we can fill the gaps that need to be filled in the community. There’s a lot of unmet needs that I’m probably not even aware of, and I want everyone to know and understand that that’s what we’re here for. We’re here to meet those needs no matter how grand they are.
Kerri Fitzgerald:
Amazing. Well, Kristen, we like to end our My Hero 360 interviews with the same question of everyone. What would you tell your younger self, knowing what you know now?
Kristen DeAndrade:
Don’t listen to them. Don’t take no for an answer. I was pretty good about that when I was young, but it took a lot. Stand firm in your decisions and know that you know what the right path is for you.
Kerri Fitzgerald:
Amazing. Well, Kristen, thank you so much for being here. Thank you for speaking with us on My Hero 360 today.
Kristen DeAndrade:
Yeah, my pleasure.
Kerri Fitzgerald:
Thank you for everything you’re doing for the community with your Foundation. You are an inspiration, and so thank you. We appreciate you.
Kristen DeAndrade:
Thank you so much. Thank you.
Connect with Kristen and the Little Legs Big Heart Foundation:
https://www.littlelegsbigheartfoundation.org/
https://www.instagram.com/littlelegsbigheart/
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