The Little Legs Big Heart Foundation
“Living Life Beyond Height.”
Our Mission
The Little Legs Big Heart Foundation is dedicated to creating a more inclusive and empowered future for individuals and families affected by skeletal dysplasia by connecting people with trusted resources, education, medical expertise, advocacy, and one another. We do this through community building, global outreach, and broad impact across diverse medical conditions, geographic regions, cultures, and lived experiences.
We are committed to redefining inclusivity within the dwarfism community, ensuring every individual has access to the resources, relationships, and information needed to live life beyond height.
We recognize that a skeletal dysplasia diagnosis extends far beyond physical challenges. It also involves navigating emotional well-being, mental health, social inclusion, and complex medical decisions. At The Little Legs Big Heart Foundation, every path is respected, every voice is valued, and every individual and family is equipped to thrive.
The Power Of Community
No one should have to navigate a skeletal dysplasia diagnosis alone. Whether you are a parent, an individual with skeletal dysplasia, a family member, caregiver, healthcare provider, or researcher, we believe that connecting with people who truly understand can make all the difference.
At The Little Legs Big Heart Foundation, we believe community is the foundation for hope, healing, and lifelong support. We bring individuals and families together through trusted relationships, shared experiences, and access to specialized resources that empower them to navigate every stage of their journey with confidence. We recognize that every diagnosis, every path, and every medical decision is unique, and we are committed to creating a welcoming, inclusive community where every voice is valued and every individual belongs.
No matter where you are on your journey—from diagnosis to adulthood, from uncertainty to confidence—you'll always have a place here. Together, we are building a stronger, more connected global skeletal dysplasia community where inclusion, support, and opportunity help every individual and family achieve the highest possible quality of life.
Our Initiatives
The Little Legs Big Heart Foundation is committed to improving the lives of individuals and families affected by skeletal dysplasia through specialized care, education, advocacy, research, financial assistance, and meaningful relationships.
We connect our community with leading medical experts through initiatives like our Provider Directory while helping reduce financial barriers to specialized care through the Little Legs Lifeline Fund, which provides assistance for essential medical consultations, procedures, therapies, and travel.
Recognizing that a skeletal dysplasia diagnosis extends far beyond physical challenges, we foster a strong emotional support network that connects individuals and families with peers who understand their journey, creating a community built on compassion, encouragement, and shared experiences.
Our annual Skeletal Dysplasia Conference brings together patients, caregivers, healthcare professionals, researchers, and industry leaders from around the world to share knowledge, build relationships, and advance collaboration across the community. We advocate for the rights, inclusion, and representation of individuals with skeletal dysplasia at the local, national, and global levels by partnering with policymakers, advocacy organizations, and healthcare leaders to promote awareness and meaningful change.
As a trusted educational resource, we provide accurate, evidence-based information to individuals, families, healthcare professionals, and industry partners to support informed decision-making and improve standards of care. We also champion research and innovation by collaborating with clinicians, researchers, and industry partners to advance scientific understanding, improve treatments, and accelerate the development of new therapies that enhance health outcomes and quality of life for the skeletal dysplasia community.
Become a Member – It’s Free!
Board of Directors
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Kristen DeAndrade
Founder & President
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Brad Negulescu
Vice Chair
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Brianna Beck
Medical Board
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Jennifer Edwards
Secretary
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Derek DeAndrade
Treasurer
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Michael Jay Garner
Board Member
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Juliana Negulescu
Board Member
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Pamela Matzner
Board Member
Our Commitment to Inclusion and Equality
The Little Legs Big Heart Foundation complies with all applicable federal civil rights laws and does not discriminate on the basis of age, race, ethnicity, religion, culture, language, physical or mental disability, socioeconomic status, sex, sexual orientation, gender identity or expression, or medical management choices.
The Foundation and our community members are committed to creating an inclusive and welcoming environment for everyone, regardless of their background or medical decisions. We do not exclude individuals or treat them differently based on any of these factors. Everyone deserves equal access to our programs, support, and community.