Jillian Arnold

Jillian is a wife to her partner, Donald, and a mother to her two children, Roman and Stella, who both suffer from an ultra-rare and life limiting genetic disorder, ASMD (Acid Sphingomyelinase Deficiency or otherwise known as Niemann Pick Disease Type A/B). Their son was born September 2018 and was diagnosed with ASMD in May of 2019 and their worlds were completely flipped upside down. ASMD is a progressive multi-system genetic disease that can lead to an early mortality. There is no known cure, but there are some promising treatments in the works. It primarily affects the liver, spleen, lungs and in the most severe cases (like that of her two children), it causes a rapid nuero-degeneration in the brain similar to a baby Alzheimer's. Jillian also sits on the Research Participant Advisory Committee for their local children's hospital where she helps provide feedback to researchers and administration with the collective goal to make a greater impact on health outcomes through research. She is a member of the Genomic Information Commons Patient Advisory Panel as well as a member of the Family Support and Assistance Committee for the National Niemann Pick Disease Foundation.