Kate, who has a laugh you will never forget, was diagnosed with Alagille Syndrome when she was 3 months old.
Alagille Syndrome is a rare genetic disorder. It can cause liver, heart, and kidney disease, as well as problems with bones, eyes, hearing, and growth. Alagille Syndrome is a rare disease that occurs in 1 out of 100,000 births. Kate’s biggest struggle has been with her liver disease and with the discomfort and itching that comes along with liver failure. We anticipate at some point in the future, she will need a liver transplant. Kate also has more minor involvement with her heart, eyes, and hearing.
The Alagille Syndrome Alliance (ALGSA) hosts an annual virtual walk fundraising campaign every fall. ALGSA is the only organization in the world connecting patients and families affected by Alagille Syndrome. The ALGSA provides funding to support research for treatments and a cure. They also provide advocacy throughout the US for ALGSA research and support, as well as in connecting the world’s experts with families. They are the leading provider for cutting edge information and research for families throughout the world.