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June Cheng and Ron Garber with Yaya
  • Alumni Story

Ron Garber (Heilicher ’92) and June Cheng's first child, Yael (Yaya) was born in 2015 and was diagnosed with 4H Leukodystrophy (4HL).They created the Yaya Foundation in 2018 to pursue research and treatments for children with 4HL.

When Ron Garber (Heilicher ‘92) and June Cheng’s first child, Yael (Yaya), was born in 2015, they were thrilled about their growing family. But that excitement turned to anxiety when, at six weeks old, Yaya began to miss developmental milestones. Increasingly desperate as her health problems worsened, Ron and June visited a wide variety of specialists until, at eight months old, Yaya was diagnosed with 4H Leukodystrophy (4HL) — an extremely rare, degenerative neurological disorder about which very little was known. Tragically, Yaya passed away from this genetic disease at the age of 13 months.

As grieving parents and advocates for their daughter, Ron and June committed to ensuring that other families who have children with 4HL and related conditions would have the support they need to pursue treatment and, hopefully one day, a cure. “We looked around for the ‘American Cancer Society’ of 4HL and found there was absolutely nothing to support families in dealing with this serious diagnosis,” Ron said. “Heilicher taught me that if you see something wrong, it is your obligation to do something about it.” This commitment led Ron and June to create the Yaya Foundation in 2018 to pursue research and lifesaving treatments for children with 4HL.

In 2020, the Yaya Foundation received a grant of $450,000 from the Chan Zuckerberg Initiative’s “Rare as One” project. This grant allowed the Yaya Foundation to build an infrastructure, hire an executive director, and further professionalize its activities. The organization continues to go from strength to strength, launching new initiatives, building and facilitating research and treatment partnerships, and creating connections between families affected by 4HL internationally.

When asked what Ron and June hope people take away from their story, June responded, “Initially, when we lost Yaya, we lost our sense of purpose. In the years that have followed, we have taken great comfort in building something that other people can depend on.” Ron added, “It’s so easy to hear the name of a disease or how rare it is and think, ‘It’s not my problem.’ But this could happen to any one of us. I want people to have a sense of obligation to be present for members of the community who have not been so fortunate.”

Since Yaya’s passing, Ron and June have added two healthy children to their family — Ilan (born in 2018) and Yasmin (born in 2020). June is an attorney in immigration law at Fredrikson and Byron, P.A., and Ron serves as inhouse counsel at Medtronic. Among other experiences, Ron credits his K-6 Heilicher education with providing him the moral foundation, public speaking skills, and leadership opportunities that have served him well as a changemaker and rare disease advocate. He currently serves on the Heilicher Board of Trustees.

For more information about the Yaya Foundation, visit