About Yaya Foundation

The Yaya Foundation is dedicated to finding treatments and a cure for 4H Leukodystrophy by funding and connecting critical research efforts and to providing education, support and advocacy for children and families living with 4H Leukodystrophy today. To review a copy of our IRS Form 990, click here.

Who is Yaya?

A playful, sweet girl who loved her octopus toy and being kissed on her plump cheeks, Yael “Yaya” Garber was diagnosed with 4H Leukodystrophy at just eight months of age. Though 4H took Yaya just weeks after her first birthday, she filled every one of her—and her family’s—days with adventure, curiosity and unbridled joy.

At the time Yaya was diagnosed, very little was known about 4H. Her prognosis was unclear. Academic articles were both limited and confusing. Knowledgeable medical care was nearly impossible to find. No treatment existed that could help her. And no organized effort existed to support families or advance research into the care or treatment of this disease.

Yaya’s parents, June Cheng and Ron Garber, were determined to change this. Joined by friends and the parents of other children diagnosed with 4H, Yaya’s family founded the Yaya Foundation—an organization dedicated to supporting families and unlocking the mysteries of this disease through research.

The mission of the Yaya Foundation is to fight for people and families affected by 4H Leukodystrophy by accelerating discovery of therapies and providing educational and emotional support to affected families.

Our Mission & Philosophy

We are taking on the work needed to unlock a cure with the same zeal Yaya had for life.

—Ron Garber, Yaya’s father and co-founder of the Yaya Foundation