After his niece, Ava Passow, passed away with a rare disease in 2012, Doug Passow created the Gene Giraffe Project in her honor.

The charity raises awareness and funds for children with rare diseases.

“I put the Gene Giraffe Project together to find families like ours and to let them know they aren’t alone when they have a child that has a rare disease,” Doug said. “It’s been an honor to serve and help a lot of kids around the area and in Fort Dodge.

“I’ve loved every minute of doing it.”

On Saturday, they will host the annual golf tournament at Lakeside Municipal Golf Course. It’s a four-person best shot tournament, starting at 9 a.m. The cost is $200 per team.

All proceeds from the event go to the Jackson and Ava Passow Memorial Scholarships to help seniors at Manson Northwest Webster, Fort Dodge Senior High and St. Edmond.

“Ava Passow was just three years old when she passed away from a rare disease that affects only a handful of people in the United States,” said Andrea Passow, Ava’s mother. “Eight years later, her brother Jackson was just two years old when the inherited the disease that claimed his young life.

“GM1 Gangliosidosis is an inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord. According to the Genetic and Rare Diseases Information Center, fewer than 5,000 people in the U.S. have GM1 Gangliosidosis.”

The tournament was put together in honor of the siblings.

“The tournament honors Ava and Jackson’s memory by bringing awareness to many rare diseases that many people are not aware of,” Andrea said. “Hosting this golf tournament every year not only provides scholarships to high school graduates, but it also helps families in the hospital who may need some extra support along with sending care packages to children in the hospital.”

This tournament and other fundraisers benefit those in need during times of struggle.

“The Gene Giraffe Project hosts a golf tournament and other fundraising events to raise money for personalized care packages and scholarships,” Andrea Passow said. “The Ava and Jackson Passow Memorial Scholarship is given to students at Fort Dodge Senior High, Manson Northwest Webster High School and St. Edmond High School who have dealt with an unusual life experience, special needs in some capacity, or those going into nursing and social services fields.”