Help my family with RVCL-S disease

This year my father, Jody Harrison, along with his 2 brothers, who are all veterans, 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 the University of Pennsylvania 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. The disease is currently progressing in my father as he lost his left eye and is legally blind. He also now needs assistance completing daily tasks as he is extremely weak and is losing his ability to speak. I am hoping to raise awareness of this awful disease and any donations will help cover any bills that we receive.