The Alagille Syndrome Alliance (ALGSA) is preparing to host its first annual gala, The Gala of Dreams, this year on Saturday, June 30th, 2018 at the San Diego Marriott Del Mar.The event will honor individuals that are involved with the latest in Alagille Syndrome research. The theme of the event is “The Dawn of a Dream Presented by Albireo Pharma and Shire Plc.” This theme highlights the most recent advances in research. The event will also celebrate the 25th year of operations for the ALGSA.
Alagille Syndrome,also known as Alagille-Watson Syndrome, is a genetic disorder that primarily affects the kidneys, liver, and heart. Symptoms of liver damage include itching, jaundice, lack of bile secretion, cholesterol deposits on the skin, and enlarged spleen and liver. Heart symptoms range from Tetralogy of Fallot, heart murmurs, pulmonary stenosis, and other defects. Other symptoms include abnormal bone shape in the spinal column, distinct facial features, and eye problems. To learn more about Alagille Syndrome, click here.
The ALGSA is a vital resource and advocate for the Alagille Syndrome patient community. The nonprofit organization has played a central role in building the patient community. This ensures that patients have a place where they can feel belonging and support from others that can relate to their challenges. The community also allows patients easier access to the resources that they need.
The gala event is open to anyone who supports the Alagille Syndrome community, and will include a silent auction that will honor the work of researchers such as Dr. Duc Dong, who, in collaboration with Sanford Burnham Prebys Discovery Institute, has pioneered much of the latest research. The Gala of Dreams will also serve as an educational event and a celebration of contributions and support from allies in the nonprofit and medical industry.
The ALGSA has been hard at work for 25 years, tirelessly striving to help build the Alagille Syndrome community and to support the latest research and treatments. This event will serve as an opportunity to commemorate the organization and its dedicated team of staff and volunteers, who are unsung heroes in the fight for a cure against this debilitating syndrome.
For more information about the event, please refer to our event calendar here.