September 3, 2021

May 17th, 2001 was a day that changed my life forever. Julia Marie Novak was born at 6:20pm, weighing seven pounds and eleven ounces. I remember thinking to myself that…

August 2, 2021

Kora has always been a gift to her parents, starting from the moment of her arrival on December 25th. In her first few weeks of life, Kora struggled with acid…

July 24, 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….

June 17, 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…

June 2, 2021

Dr Nicole Wolf, 4H Leukodystrophy specialist and rare disease expert, speaks about data collection and patient registries: what they are used for, how they benefit patients, how data are collected…