PatientWorthy will be offering a pair of tickets to the Alagille Syndrome Alliance’s (ALGSA) First Annual Gala. The tickets will be available for patients or caregivers in the San Diego area. The event, titled “The Gala of Dreams” will be held to honor the individuals involved in the latest Alagille Syndrome research. The ALGSA is dedicated to the Alagille Syndrome patient community, and is a primary resource and advocate for patients with the disease.
Alagille Syndrome is a rare genetic disorder that affects multiple organs and systems of the body such as the liver, heart, and kidneys. The symptoms varies significantly– some patients experiencing relatively mild effects, while others will require organs transplants. Liver damage in Alagille Syndrome can cause symptoms such as jaundice, itching, cholesterol deposits on the skin, pale stools, and enlargement of the liver and spleen. Heart symptoms include pulmonary stenosis, heart murmurs, and Tetralogy of Fallot. Other heart conditions and abnormalities may occur, and Tetralogy of Fallot requires surgical repair to prevent death. People with the syndrome have distinct facial features, and an unusual butterfly shape to one or more bones of the spinal column. Treatments include surgery to correct heart defects, medication to treat liver complications, and vitamin supplementation. To learn more about Alagille Syndrome, click here.
The theme of the first annual gala is “The Dawn of a Dream,” in order to herald the most recent advances in research and also to celebrate the 25th anniversary of the ALGSA. The event is especially meant to commemorate the recent achievement of Dr. Duc Dong, whose research with the Sanford Burnham Prebys Discovery Institute was hailed as a considerable breakthrough for Alagille Syndrome. Dr. Dong is based in San Diego.
The gala will be open to anyone that wants to show support to the Alagille Syndrome community, such as patient, families, doctors, researchers, and pharma reps. The event will also serve to inform attendees and acknowledge the latest support and contributions from other allies in the nonprofit field and medical industry.
If you would like to learn more about this event, please refer to PatientWorthy’s event page here. Be the first to tell us why you would like to go to this exciting event and the tickets are yours!