Welcome to Little Legs Big Heart Foundation!
HOLY SH*T IT FINALLY HAPPENED!
Welp.
Here we are.
Little Legs Big Heart THE FOUNDATION is officially a thing, and I can hardly believe it! Truth be told, I’ve been living in a constant state of borderline panic attack for a solid month leading up to this moment, but we’ve finally made it. My hair is gray, my brain is mush, my heart is full and I cannot stop smiling/laughing/feeling excited.
And let me tell you, this isn’t about me—this is about and for YOU; my people, my community and the next generation.
We’re here to talk about it all. The joy, the fear, the anger, the sadness—everything that comes with a skeletal dysplasia diagnosis. There are no topics off-limits here.
Concerned about mental health? I’ve got connections who can help.
Want to know about limb lengthening? We’ve got the resources you need.
Just want to be part of a feel-good community where it doesn’t cost an arm and a leg to have fun? NOW we are talking.
Curious about the latest drug trials? We’re in the know.
Little Legs Big Heart is all about creating a community where you can be your authentic self, without judgment and without barriers, just love and support.
This community? It’s all about YOU (have I made this obvious enough yet?!) and your family who are affected by skeletal dysplasia. Your feedback is so important. How do you want to be supported by your LLBH family?
Our mission at LLBH is simple yet profound: to provide specialized care, advocacy, education, and support to individuals and families living with skeletal dysplasia. We’re here to make sure no one feels alone on their journey. Whether it’s through our upcoming conference, the resources we’re building, or the emotional support network we’re creating, we are committed to making a real difference in the lives of those who need it most — YOU.
Are you coming to our inaugural conference?! MARK YOUR CALENDARS, because there will be something for everyone. We’re planning sessions that cover everything from medical care to mental health, from family support to the latest in research and innovation. And if there’s something you don’t see that you want, tell me! We’re building this together, and I’m here to listen and make sure your needs are met.
I’m beyond excited for what’s to come. This is just the beginning, and I can’t wait to see where this journey takes us. So, let’s make waves, let’s break barriers, and let’s show the world what it really means to Live Life Beyond Height!
With a REALLY BIG Heart and Abundant Gratitude,
Kristen
