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Yaya Foundation Awarded Chan Zuckerberg Initiative Grant

$450,000 grant will support patient-led 4H leukodystrophy research network led by the Yaya Foundation for 4H Leukodystrophy

Today, the Yaya Foundation for 4H Leukodystrophy announced its receipt of a $450,000 grant from The Chan Zuckerberg Initiative’s (CZI) Rare As One Project. CZI’s mission: to support patient communities’ efforts to accelerate research and drive progress in the fight against rare diseases. The Yaya Foundation is one of 30 patient-led organizations that received a total of $13.5 million in funding from CZI. 

“A community of support and research is so important when a family is trying to learn about their child’s health and medical needs and advance research that will ultimately impact their children’s lives. For rare diseases, that community is even more critical,” said Ron Garber, the foundation’s co-founder and president. “We came together as families because we know we can connect families, advance research and pool our collective knowledge to work toward therapies and a cure. CZI’s support will enable us to maximize the impact of our work.”

As the only organization in the world dedicated to fighting for patients and families affected by 4H Leukodystrophy, the Yaya Foundation is singularly focused on advancing research and knowledge to find therapies and cures for 4H Leukodystrophy. CZI’s Rare As One grant will provide critical funding, training, and capacity-building. 

Over the two-year term of the Rare As One grant, the Yaya Foundation will build a collaborative research network with these goals: 

  • Building a community of researchers and clinicians with the skill sets needed to advance research, new treatments and a cure for 4H Leukodystrophy; 
  • Identifying and prioritizing the highest leverage and most critical research; 
  • Directing funding to make the most impact for patients; and  
  • Disseminating findings rapidly so that research can effectively be built upon to drive new treatments – and find a cure. 

To launch this collaborative effort, the Yaya Foundation will host the first international scientific conference dedicated to 4H Leukodystrophy in 2020. This disease community’s research and clinical stars, including Dr. Geneviève Bernard (McGill University/Montreal Children’s Hospital), Dr. Adeline Vanderver (Children’s Hospital of Philadelphia), and Dr. Nicole Wolf (Amsterdam University Medical Center), have agreed to join the effort and provide leadership alongside the group’s patient and family community.

“Our small but resilient community believes that  collaboration among patients, families, researchers, and clinicians will accelerate progress in our search for a cure. We are hopeful that the expertise of our scientific community, combined with the commitment and input of our patients and families and the power of the Rare As One platform, will change the outlook for patients suffering from 4H leukodystrophy,” Cheng said. 

About the Yaya Foundation for 4H Leukodystrophy 

Co-Founded by three groups of parents of children with 4H Leukodystrophy, the Yaya Foundation is the only organization in the world dedicated to fighting for patients and families affected by 4H Leukodystrophy. It aims to create an eco-system that will advance efforts to find a therapy or cure for patients with 4H Leukodystrophy and to provide educational and emotional support to families. For more information, please visit


When Yaya was finally diagnosed with 4H Leukodystrophy, we were devastated and confused — there was very little information available about 4H Leukodystrophy and it was impossible to understand what this disease meant for our daughter.

Even Yaya’s very reputable and experienced geneticist admitted that he knew very little about this disease. Most importantly, he was not able to give us a prognosis for Yaya, and we were left scared and unsure of what this diagnosis meant.

He sent us home with copies of three academic articles filled with medical and scientific terms that we did not understand and from there, we started our quest for any information that could help us understand this disease and care for Yaya.

Yaya Garber with parents June and Ron
Yaya Garber with parents June and Ron