Alagille Syndrome (ALGS) is very rare. About 7,900 individuals in the world have it and it is a devastating disease affecting most of the major organ systems in the body to varying degrees. In 1990, Cindy Luxhoj’s daughter, Alaina Hahn, was born with ALGS. After finding that there was no information about this disease and no support for affected individuals, she became frustrated and, in 1993, founded the Alagille Syndrome Alliance (ALGSA).
We started with two families and a one-page newsletter. Today, the ALGSA is a 501(c)(3) public charity with a Medical Advisory Board, a quarterly newsletter and web site that reach over 700 families, and worldwide recognition. We provide a vital link between families and offer them the resources they need to help their children live longer and healthier lives.
Recently, a family visited the ALGSA site. They have four children, three of whom had different problems for years that no one could identify. They recognized the symptoms and came to the family conference offered by the ALGSA every two years. Through individual consultation with a doctor there, they confirmed that three of the children have ALGS – and later found out that the father has it as well and had gone undiagnosed his entire life. Now the family knows what they are dealing with and what to do about it. After the conference they hosted a family gathering in their area to spread the word and support other families to let them know they are not alone.