From Legacy to Future: 40th Anniversary Campaign

40 Years of Progress. One Bold Goal.

Forty years ago, at a kitchen table in New Jersey, two determined parents refused to accept isolation, confusion, and fear as the only path forward after their child’s diagnosis with a rare histiocytic disorder. What began as a search for answers and connection has grown into a global community of families, patients, physicians, and researchers united by one shared goal: a cure for histiocytic disorders.

This year, we celebrate 40 years of progress - and we’re marking this milestone with our most ambitious challenge yet.

In 2026, our goal is to raise $400,000 to accelerate research, expand patient support, and increase awareness of these rare diseases.

Why This Challenge Matters

Together, this community has already made remarkable progress:

• $8 million invested in groundbreaking research

• 200+ research grants awarded to scientists around the world

• Measurable progress in reducing mortality rates

• Identification of gene mutations enabling targeted therapies, and  

• Growing recognition of adult patients and underdiagnosed forms of histiocytic disorders.

But the work is far from finished.

Families are still searching for answers. Promising research still needs funding. And too many patients are still waiting for effective treatments.

Your Support Makes the Difference

This challenge isn’t just about reaching a number—it’s about what that number makes possible:

• Advancing research to develop better treatments and ultimately cures

• Supporting patients and families who are navigating life with a rare disease

• Raising awareness so histiocytic disorders are recognized, diagnosed, and treated sooner

Whether you’ve been part of this community for decades or are just discovering our mission, you are part of what makes this progress possible.