ALAGILLE SYNDROME ALLIANCE
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Mission Statement
For over 20 years, the Oregon-based Alagille Syndrome Alliance (ALGSA) has been the national advocate for Alagille Syndrome (ALGS), a rare genetic disease. ALGS occurs in about 1 in 70,000 individuals and affects most of the major organ systems in the body. Our efforts have led to greater understanding, increased research, and growth of a supportive community of individuals who care about and for ALGS Warriors around the globe. Our mission: Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome.
About This Cause
The Alagille Syndrome Alliance (ALGSA) is a 501(c)(3) public charity based in Oregon. Our organization was sparked into existence in 1993 by a girl named Alaina Hahn, who was born with a rare genetic disease called Alagille Syndrome (ALGS), and her mother Cindy Luxhoj, who would not quit looking for answers to help her daughter live the best life possible. From that small beginning, we have grown into a thriving organization serving an estimated 2,000 strong in the United States and 10,000 people around the globe suffering from this disease, who we call ALGS Warriors. ALGS causes most of the major organ systems in the body to malfunction to varying degrees with wide-ranging symptoms, although it tends to have the most severe impact on the liver, heart, lungs, vascular system and bones. ALGS is caused by mutations in two genes – JAG1 (primarily) and NOTCH2 (in a few cases) – on chromosomes 20 and 1, respectively, and is autosomal dominant, meaning one mutated gene in a pair dominates the unmutated gene resulting in disease. ALGS Warriors are born with this rare disease and there is no known cure. The ALGSA is governed by a volunteer Board of Directors and receives worldwide recognition as a source of current, accurate information about this rare and complex disease. Our organization also includes several expert advisors, a Medical Advisory Board, four standing committees, and paid staff. We provide a vital link between families and offer them the resources they need to help their children live longer and healthier lives. We also provide financial support for research and are actively involved in encouraging our families to participate in research studies vital to unraveling the mystery of ALGS and identifying new diagnostic tools and treatments. The ALGSA is striving to extend our reach to more families, educate health professionals and participate in research initiatives, and is tirelessly working to build a better life for everyone living with this rare disease. What the future may hold is beyond our power to predict, but we have big plans, bright aspirations, and the comfort of knowing there are hundreds of people hoping we succeed. Our vision is simple – that, as a result of our efforts and in partnership with our stakeholders, all ALGS Warriors thrive in a close-knit community full of loving support, easily accessible resources, and life affirming hope.