Gene Giraffe holds movie
A despicable movie will help one of the newer charities in town raise money for families facing deadly genetic diseases.
The Gene Giraffe project will show “Despicable Me 2” at 8:30 p.m. Friday outside at the Dariette, 17 S. 12th St., as its first fundraiser.
The Clare-based organization was formed to raise funds for families of people with rare and inherited diseases, as well as raising awareness and advancing cures through research. Doug Passow and his mother, Barb Passow, started Gene Giraffe after their family went through an extended fight with a rare disease.
“It was inspired by my 3-year-old niece, Ava Passow, who was diagnosed with GM1-Gangliosidosis,” said Doug Passow, “which is a rare genetic disorder where the body is lacking in enzymes, so the brain and spinal cord get attacked, until – it normally ends life early.”
Ava Passow died in December 2012. Her parents were Danny and Andrea Passow.
“Ava had a lot of long, lengthy hospital visits up in Minnesota,” Doug Passow said. “My project set out to raise awareness, but more so to help families that have long hospital stays.
“Besides the project being inspired by her, it was inspired by all the people we’ve encountered in our journeys up in Minnesota, in Des Moines, and wherever.”
The project was founded in July 2013, and officially became a 501(c)(3) early this month. So far it has sent care packages to families in Minnesota and Des Moines hospitals, and partnered with the Prairie Lakes Area Education Agency to donate books and other items.
“Kind of a little bit everywhere,” Passow said.
After his experience with Ava, Passow said he saw how much help families need paying for the basics.
“From my experience, people need help with gas cards and food,” he said. “That really tallies up quickly when you’re in a hospital.”
Passow said he also worked with Gov. Terry Branstad, and Iowa State Sen. Daryl Beall, to get Feb. 28 recognized by the state as Rare Disease Day.
He also has donated some butterfly benches to the park in Clare in memory of Ava.
Gene Giraffe’s next big project is to create a brick paver memorial park in Clare, where people can display mementos of their loved ones. Passow hopes that will be finished by next spring.