When Yaya was finally diagnosed with 4H Leukodystrophy, we were devastated and confused. Little information was available 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…
Meet Courtney and Nick and their two beautiful daughters, Jamie and Layla. In 2019, both Jamie and Layla were diagnosed with 4H Leukodystrophy (POLR3A). Jamie Jamie was born in 2016 and had developmental struggles from about 4 months old, not hitting any of the expected milestones on time. She bobbed her head and shook all…
Asher is a beautiful, 7-year-old boy living with 4H Leukodystrophy, POLR3B type. His family, including an older sister, were thrilled to welcome him as a healthy, full-term baby. He was happy, had an infectious smile and met all early milestones. Diagnosis At around 14 months, Asher began walking. As he grew, his parents noticed he…
Long before I had ever heard of learning disabilities, attention deficit disorder, language impairments and emotional handicaps, I believed that young children learned what their parents taught them or what their parents modeled for them. By the time my middle son, Jon, was three years old, my confidence in what I was able to teach or…
$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…
In everything we do, we’re working to speed progress toward a cure. Learn more about our ambitious research strategy.
Learn More >>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.
