Help my family and others with RVCL-S disease

This year my father, Jody Harrison, along with his 2 brothers, were officially diagnosed with Autosomal Dominant RVCL-S disease (Retinal vasculopathy with cerebral leukoencephalopathy and systemic manifestations). In simpler terms, RVCL-S disease is currently a terminal, inherited disease that affects the eyes, brain, liver, and kidneys. This disease is so rare that only about 40 families worldwide have been diagnosed. There is currently no treatment for RVCL-S. Symptoms for this disease often begin in middle age (35-50) years old, and has a life expectancy of 5-10 years following the symptoms. Since there is no treatment for this disease, my father and his brothers have been risking their lives working with a research center at Washington University School of Medicine in St. Louis in a clinical study with the hope that it will lessen their pain, increase their life expectancy, and provide the team with information to help others. I would like to create awareness of this disease, with the hope of helping their research team to learn more, and find a cure. Myself, along with my 2 siblings and cousins, are at risk of obtaining this disease since it is genetic. Any donations to the research center in St. Louis will provide hope to my family and others in this research team finding a cure.