NEW ORLEANS – The Rare Trait Hope Fund’s annual charity dinner, “Daniel and Alexander's ‘Wildest Dreams’ Party” takes place on Oct. 8, at The Columns Hotel, 3811 St. Charles Ave., to promote awareness of rare diseases and to raise funds to develop treatment for a rare, fatal childhood disease called Aspartylglucosaminuria (AGU), which currently has no cure.
Jody Taravella, who co-directs the 501(c)(3) nonprofit organization with his wife Julia said, “Thanks to the latest scientific advancements and our funding, researchers have developed several innovative treatments for AGU.”
Taravella’s sons Daniel, 23, and Alexander, 17, both have AGU, a childhood metabolic disorder where the body lacks aspartylglucosamidase (AGA), one of the lysosomal enzymes. The enzyme is required to break down some sugars attached to proteins (glucoproteins). The excess toxic sugar waste builds up in body tissues, the liver, spleen, thyroid and brain. The process is gradual but damages the tissues and organs progressively destructing cells.
Taravella said because of the rareness of the disease, the progress in the development of a cure depends on their fundraising success.
“We are raising funds to start clinical trials in patients,” said Taravella. “These treatments will allow all AGU children an opportunity for a full and healthy life.”
Taravella is seeking donations for the event’s silent auction. He said organization reps will pick up any donated item, or they can be mailed to:
Rare Trait Hope Fund
406 Schlief Dr.
Belle Chasse, LA 70037
All proceeds from the event will support the development of the disease treatments, he said.
Learn more about how the Taravella family is trying to find a cure for their sons’ disease here
