We are excited to share a survey developed in collaboration with the MLC Clinical Consortium and Alliance MLC. This survey aims to identify the symptoms of MLC that have the greatest impact on daily life for families and individuals living with the condition. Why is this important? Understanding which symptoms are the most burdensome and important...
The first ever MLC Scientific Symposium took place on February 22-23, 2024 hosted by Alliance MLC. Physicians and researchers around the world convened in Amsterdam for two days to discuss their research and decide the way forward. All attendees were greatly appreciative of this unique opportunity to meet and learn from one another, spend time...
The ULF Family Conference took place on June 28-29, 2024 in Chicago. This is an important annual event where affected families have access to the world’s top leukodystrophy physicians and researchers. Held over two days, the conference aims to provide the latest scientific information to keep families informed on advances in the field, and also...
Our MLC Consortium, a group of clinical MLC experts founded this year, has just released their first statement in the Pediatric Neurology journal. Their editorial letter examines a recent publication of two patients with MLC who received a drug called Anakinra, typically used to treat arthritis in children. According to the published case report, the...
Alliance MLC, with the support of our International Medical Consortium, is establishing a global patient registry. A registry is a secure international database that contains all the relevant demographic, genetic and disease specific information of those affected by this disease. The MLC registry is a key tool for researchers and critical to finding a treatment....
The ULF Family Conference takes place on June 23-24, 2023 in Chicago. It is an important annual event where affected families have access to the world’s top leukodystrophy physicians and researchers. Held over two days, the conference aims to provide the latest scientific information to keep families informed on advances in the field, and also...
Hello, we are Marla and Ron Chapleau and we have 3 children, all of whom are adults now. It is our middle child, Aidan, born in 1998, that is affected by MLC1 and like most of us, we didn’t know it at first. The United Leukodystrophy Foundation (ULF) proved to be very useful for us,...
Lorenzo is 16 years old and has MLC1. We found out about the disease when he was 8 months old; following the macrocephaly, we did the MRI with which MLC was diagnosed. Despite the condition, Lorenzo developed the ability to speak very early and in a very clear and precise way. On the other hand,...
My son Kuzey was born at 31 weeks. He stayed in the incubator for 1 month and was released with no health complications. We were told that he would recover with good care at home. We went to the family doctor and had his head measured. They said that there are about 500 diseases that...
In the spring of 2022 our youngest daughter Carlee had a seizure. In the days and months that followed, an MRI with conformational genetic testing resulted in her diagnosis of MLC1. Our specialist had never seen a case like this, neither did the neurosurgeon who ordered her MRI. In search of answers, I traveled to...
