Local nonprofit expands its reach

Gene Giraffe Project was founded to help those suffering from rare diseases

A stuffed blue sloth recently was perched on a table at the Highland Park Rehabilitation Center in Fort Dodge, awaiting a child who will cherish it.

The sloth, along with other stuffed animals and a bunch of toys that will help children grow stronger and more nimble as they play with them, arrived at the center courtesy of the Gene Giraffe Project. That’s a local nonprofit organization that evolved from one family’s heartbreak with a mission to help those, especially children, who suffer from rare diseases.

Diseases are considered rare in the United States if they infect fewer than 200,000 people. There are about 7,000 known rare diseases, and unfortunately, researchers continue to identify more of them.

More than 30 million Americans are affected by a rare disease. Kids are hit especially hard, accounting for about 50 percent of the victims.

Little Ava Passow, of Clare, was one of those kids. She was 3 when she died of a rare disease.

Amid their grief, her family members decided to help those facing similiar medical woes. Led by Doug Passow, in June 2013, they founded the Gene Giraffe Project. Its mission is to provide support and financial assistance to those suffering from rare diseases and their families.

In the last couple of weeks, the organization has made its presence known in a significant way.

It gave about 100 teddy bears and other stuffed critters to UnityPoint Health — Pediatrics in Fort Dodge. They were handed out to children on Feb. 28 in honor of Rare Disease Day.

The Gene Giraffe Project gave the staff of the Highland Park Rehabilitation Center $500 to spend on toys that the therapists believe would be useful for physical, occupational and speech therapy.

“We got toys that would promote physical mobility as well as learning ability,” said Jayne Kolacia, a physical therapist.

In addition to the toys picked out by the therapists, the Highland Park Rehabilitation Center received 65 stuffed animals, including the blue sloth, to be given to young patients.

The Gene Giraffe Project, which is expanding its reach, is an outstanding organization. We salute Doug Passow and his family for taking on this mission.

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