February 24, 2021
US Bank Stadium, Along with Landmarks Across the United States, Will Light up in Support of The Rare Disease Community MINNEAPOLIS, MN. (February 24, 2020) — Since the creation of Rare Disease Day in 2008, it has been a time for the rare community to come together, find support, and shine a light on rare…
January 12, 2021
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…
January 12, 2021
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…
January 12, 2021
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…
January 12, 2021
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…
February 3, 2020
$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…