Proud to be #RareAsOne

Celebrating Year One of the Chan Zuckerberg Initiative Grant

The Yaya Foundation for 4H Leukodystrophy is celebrating one year of growth and accomplishments thanks to the joint efforts from our partners at CZI and collaboration with our Rare As One network.

“We are so grateful to the Chan Zuckerberg Initiative and the entire #RareAsOne family for the opportunity to be a part of CZI’s Rare As One program. The grant, through its training and capacity building, networking, and funding, has changed the trajectory of our disease community’s efforts to collect data to improve understanding of 4H (POLR3-Related) Leukodystrophy and accelerate the discovery of therapies that will help people affected by 4H live longer, better lives. Thank you, CZI!”

Ron Garber, Co-founder & President of the Yaya Foundation

We wanted to mark this milestone by highlighting some of the accomplishments that the Yaya Foundation has made in the last year with the support of the Rare As One grant and community:

  • Launched the 4H Leukodystrophy Research Network (or #4HCN), a collaborative research network of researchers, clinicians, and patients/families from different disciplines and labs across the globe.
  • Hosted 2-day working meeting of #4HLCN focused on discussing current state of science and potential pathways to better disease understanding and therapeutic discovery.
  • Created a strategic Research Roadmap toward developing a cure and therapies for 4H and started executing on it.
  • Hosted several #4HLFamilies Zoom calls at which families and caregivers connected, sharing knowledge and best practices, and just getting to know and connect with each other.
  • Created significant organizational capacity, building a professional, mission-driven team, streamlining organizational policies and practices, and working towards a sustainable fundraising model.

The Yaya Foundation is proud to be #RareAsOne and we look forward to continuing to accelerate research and support our community of families affected by 4H.