We are driven by the dream that one day, every child with 4H Leukodystrophy will have the chance to live a long, healthy life.
So we fight for these children by acting as a catalyst and a connector—bringing researchers together to accelerate the pace of discovery, while connecting families with vital education resources and emotional support.
We won’t stop until we find a treatment and, ultimately, a cure.
Your generous donation funds critical research into life-changing treatments and a cure for 4H Leukodystrophy, as well as vital programs that connect, support and empower families affected by this rare disease. All it takes is a simple click.
On April 22, 2022, The Yaya Foundation was proud to host its first 4H Leukodystrophy family conference, our Virtual Care & Disease Management Day. Together with experts from around the world, more than 40 families affected by 4H, also known as POLR3-related leukodystrophy, heard presentations on a variety of topics related to Supportive Therapies and…
On February 6th, the Yaya Foundation hosted the first of six Zoom Hangouts for #4HLFamilies in 2022! In these bi-monthly calls, anyone and everyone impacted by 4H Leukodystrophy is invited to come connect with fellow families as we all continue to learn about 4H and share related updates. Along with keeping the community up-to-speed on…
We’re starting Rare Disease Month with fantastic news! The Chan Zuckerberg Initiative (CZI) awarded The Yaya Foundation for 4H Leukodystrophy an additional $150,000 in capacity-building funds and the critical opportunity to engage with the Rare As One Network for one more year! Thank you CZI for partnering with the 4H community by including us, investing…
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