◆ Chalkbird Inc. · Our Story ◆
Built by a family — for every family.
Chalkbird Inc. exists because one family refused to let VEDS stay silent. This is who we are, why we fight, and how we got here.
◆ Who We Are ◆
A 501(c)(3) nonprofit on a mission.
Chalkbird Inc. is a 501(c)(3) nonprofit organization dedicated to saving lives by advancing awareness, education, and research for Vascular Ehlers-Danlos Syndrome (VEDS) and other Heritable Disorders of Connective Tissue (HDCTs).
We partner with families, first responders, medical professionals, and communities across the country. Through year-round events, educational programs for EMS and healthcare providers, and fundraising initiatives that directly support VEDS research, we work to ensure that no one faces this disease without knowledge, support, or hope.
◆ Our Story ◆
It started with one family's fight.
Chalkbird was born from a moment no family should have to face — and from the discovery of a pattern that stretched back more than a century.
The name Chalkbird comes from where our awareness work began — at local car shows, with a 1985 Pontiac Firebird painted entirely in chalkboard paint. Kids drew on the car while we talked to their families about VEDS, collected donations, and spread the word. The Firebird became something unexpected: a symbol of joy, creativity, and quiet advocacy for a disease too few people know exists.
Today, Chalkbird is growing well beyond its origins — but we carry that same spirit into everything we do.
◆ Why we do this ◆
Because silence has a cost.
VEDS is rare, often misunderstood, and frequently misdiagnosed. Many patients face emergency situations where every second matters — and where the difference between a good outcome and a devastating one can come down to whether anyone in the room recognizes what's happening.
We believe three things, deeply:
01
Education Saves Lives.
When first responders, medical providers, and families recognize the signs of VEDS, the outcomes change. Awareness is the single most powerful tool we have
02
Research Changes Futures.
VEDS needs better diagnostics, better treatments, and better emergency protocols. Funding the work that moves the science forward is how we build a different future
03
Community Drives Impact
No family should face VEDS alone. The people, the connections, and the support we build together make the hardest days bearable — and the progress possible
◆ What We Do ◆
How we turn awareness into action.
Chalkbird focuses its resources in four key areas — each one chosen because it directly impacts lives, and each one informed by the experiences of real families navigating VEDS.
◆ Program One
First Responder Education.
We're building a training program that equips EMS personnel, fire departments, and emergency medical providers with the knowledge they need to recognize VEDS and respond appropriately when every second counts.
◆ Program Three
Family Support.
For families newly navigating a VEDS diagnosis, we provide information, connection to resources, and the reassurance that they are not facing this alone.
◆ Program Two
Community Awareness.
From car shows with the Chalkbird Firebird to digital campaigns and educational materials, we spread awareness directly to the families who may not know VEDS is affecting them.
◆ Program Four
Research Funding.
Every dollar we raise that isn't directly funding education or support goes toward the research that will ultimately change the trajectory of VEDS — for everyone.
◆ Our Mission ◆
A world where VEDS is known, named, and navigable.
We're working toward a future where people with VEDS receive early diagnosis, expert care, and life-saving emergency response — and where families can live longer, healthier lives with the disease instead of being taken by it
That future isn't built in a day. It's built in every conversation at a car show, every first responder trained, every family member who finally gets tested, and every research study that brings us closer to better outcomes. We're in it for the long run.
◆ Our Values ◆
What guides everything we do.
We're working toward a future where people with VEDS receive early diagnosis, expert care, and life-saving emergency response — and where families can live longer, healthier lives with the disease instead of being taken by it
Honesty Without Sugarcoating.
VEDS is serious. We tell the truth about what it is, what it does, and what families need to know — even when the truth is hard.
Empathy First.
Every person we serve has a story, a fear, and a hope. We meet them there — not in medical jargon, not in bureaucracy, but in real human connection.
Action Over Performance.
We don't do awareness theater. Every campaign, every event, every dollar we raise is tied to a real outcome that helps a real family.
Transparency, Always.
Our finances, our decisions, and our progress are open. Donors and supporters deserve to know exactly how their trust is being used.
Long-Term Thinking.
VEDS has been quiet in our family for generations. The work of changing that takes decades, not months. We're here for the long haul.
