Meet Kristen Deandrade

We caught up with the brilliant and insightful Kristen Deandrade a few weeks ago and have shared our conversation below.

Kristen, so good to have you with us today. We’ve always been impressed with folks who have a very clear sense of purpose and so maybe we can jump right in and talk about how you found your purpose?

I always say, “from pain to purpose.” But I didn’t find my purpose—it found me, while I was too busy proving people wrong and picking myself back up after getting knocked down by medical complication after complication. It started in third grade when my class read Thinking Big, a story about a little girl with achondroplasia. My teachers encouraged me to share my own story with the class—how I was similar to Jamie, how I was different. That was the first time I realized the power of my voice.

From that moment on, life kept throwing challenges my way, and I had two choices: let them define me or use them as fuel. I chose the latter. Between surgeries, struggles with inclusion (even within my own community), and watching new parents of children with dwarfism get shut down when asking about medical options for their kids, I couldn’t sit back and do nothing. My purpose became clear—to advocate, educate, and make sure that the next generation of people with dwarfism had all the information, all the options, and all the support that I have been given and that they deserve.

Every time someone tells me that my words helped them, that they felt seen, or that they found the confidence to own their story—that’s how I know I’m exactly where I’m meant to be.

Appreciate the insights and wisdom. Before we dig deeper and ask you about the skills that matter and more, maybe you can tell our readers about yourself?

I do a lot of things, but at the heart of it all, I advocate, educate, and empower. Through Little Legs Big Heart, I strive to create a world where individuals with skeletal dysplasias have access to the medical care, resources, and community they deserve—without judgment, shame, or barriers. Whether it’s connecting families to specialists, sharing my personal journey, or challenging outdated narratives around disability, every step I take is about breaking barriers and opening doors.

What’s most exciting? Watching people realize their own strength. Seeing a parent breathe a sigh of relief when they find the support they need. Watching someone with dwarfism take ownership of their medical choices with confidence. Knowing that conversations I start lead to real change.

2025 is already shaping up to be a BIG year for Little Legs Big Heart! We’re expanding our reach, taking our advocacy overseas, and continuing to show up in medical spaces where our voices need to be heard. Some key events on my calendar:

📌 LLBH Skeletal Dysplasia Conference – West Palm Beach, FL (Nov 8-10, 2024)
📌 Boston Globe Panel – Boston, MA (Feb 25, 2025)
📌 QED Patient Day – San Francisco, CA (March 5-8, 2025)
📌 ACMG Annual Clinical Genetics Meeting – Los Angeles, CA (March 19-21, 2025)
📌 LPA District 3 Regional – Richmond, VA (April 4-6, 2025)
📌 LPA District 4 Regional – Jacksonville, FL (April 25-27, 2025)
📌 POSNA – Las Vegas, NV (May 14-16, 2025)
📌 LPA National Conference – San Diego, CA (July 3-10, 2025)
📌 AAP American Academy of Pediatrics Exhibition – Denver, CO (Sept 26-30, 2025)
📌 ALPE International Congress – Gijón, Spain (Oct 10-12, 2025)
📌 IPOS – Orlando, FL (Dec 2-5, 2025)

And of course, we’ve got new swag coming soon—because advocacy looks even better with a little glitter (or a lot). Stay tuned for updates, and if you want to be part of the movement, come find me. Let’s make change happen together.

Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?

Acceptance, perseverance, and growth—those three words are basically the holy trinity of my resilience.

Acceptance was (and still is!) huge for me. I had to accept my body, my journey, and the fact that not everyone was going to understand or support my choices. The sooner you stop looking for external validation and start owning your story, the sooner you’ll find peace. My advice? Get comfortable with who you are. Flaws, quirks, strengths—embrace it all. The world is going to have opinions no matter what, so you might as well love yourself first.

Perseverance—oh man, if I had a dollar for every obstacle I’ve faced, I’d be funding the LLBH Foundation’s medical grants all on my own. From surgeries to naysayers, the road has never been smooth, but that’s where perseverance kicks in. When you want something—whether it’s better health, a seat at the table, or just a freaking accessible hotel room—you have to fight for it. My advice? Keep showing up. Even on the hard days. ESPECIALLY on the hard days.

Growth, and not just the kind that limb-lengthening gave me. Emotional, mental, and even professional growth are just as important. Every challenge, every setback, and every experience has shaped who I am today. My advice? Never stop learning. From books, from experiences, from people who’ve been where you want to go. Growth is uncomfortable, but it’s where the magic happens.

For anyone just starting out, remember this: You are capable of more than you know. And when you hit a wall? Knock it down, climb over it, or find another way around. Just don’t stop.

How can folks who want to work with you connect?

Absolutely, we’re always looking to collaborate! Representation matters, and living in a world that wasn’t exactly built for you requires creativity, resourcefulness, and a whole lot of determination. That’s why Little Legs Big Heart is all about breaking barriers, finding solutions, and making life more accessible—not just for Little People, but for anyone navigating a world that wasn’t designed with them in mind.

We’re looking to connect with:

Brands & Companies who believe in inclusivity and are actually doing something about it. From the movable accelerator and brake pedals in my Jeep Grand Cherokee (absolute game-changer) to the perfect width and support of New Balance shoes (because yes, shoe fit matters), some companies are getting it right. We’re looking at you, Jeep and New Balance—and we need more of this energy across industries.

Medical & Research Professionals who are pushing for better treatment, surgical advancements, and care for those with skeletal dysplasias. Whether it’s orthopedic innovation, genetic research, or physical therapy solutions, we want to keep the momentum going.

Advocates & Creators who believe that inclusivity isn’t just a buzzword. Whether it’s in media, fashion, travel, or accessibility solutions, we want to work with people who get it and are ready to make an impact.

Fellow Badasses who have ideas, initiatives, or projects that align with our mission and want to work together to create something meaningful.

The world wasn’t exactly built for us, but that doesn’t mean we can’t shake things up and make it better. Let’s collaborate, innovate, and, of course, make it sparkle.

Contact Info:

• Website: https://www.littlelegsbigheartfoundation.org
• Instagram: @littlelegsbigheart; @littlelegs.bigheart.foundation
• Facebook: @littlelegsbigheart, @littlelegs.bigheart.foundation
• Linkedin: The Little Legs Big Heart Foundation

Image Credits

Justin Keller, Joey MacInvale