Hope For Uld

Hope for ULD exists to unite patients, families, doctors, and researchers in an effort to fund research, treatment, and education. There is no known cure for Unverricht-Lundborg Disease (ULD), and the disease progresses, despite all known treatments. As ULD is a genetic disease, recent advances in gene therapy suggest that this technology could be a promising treatment, and potential cure, for the disease. The primary goal of Hope for ULD is to fund gene therapy research and treatment under the direction of neurologist Dr. Berge Minassian and molecular biologist Dr. Steven Gray. As ULD is frequently misdiagnosed, its symptoms and severity are often misunderstood within the medical community. Several commonly prescribed anticonvulsants are known to accelerate the progression of ULD, worsening the patient’s symptoms. This makes early diagnosis of the disease critical. ULD is most commonly mistaken for Juvenile Myoclonic Epilepsy. The combination of debilitating seizures, neurodegenerative physical challenges, serious injuries, and psychiatric comorbidities create enormous challenges for families seeking to support ULD patients. Due to the rarity of ULD, families suffering with this disease often feel isolated. The secondary goal of Hope for ULD is to promote education and awareness – particularly within the medical community – regarding the necessity of early diagnosis, as well as the wide range of physical, cognitive, emotional, behavioral, and psychiatric issues that can present with this disease.