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Inaugural 'Care Walk' for Cooley's anemia slated for May 1

On May 1, people around the United States will gather and take a stroll to support the Cooley's Anemia Foundation during its first ever Care Walk.

Locally, East Syracuse mom Jennifer Stagnitta has been spreading the word about the walk she's organizing to raise funds for beta-thalassemia major research - the medical term for Cooley's anemia.

"I don't think it's going to be huge," Jennifer said of the 2011 walk, scheduled to take place at 10 a.m. at the Onondaga Lake Park Willow Bay Shelter walking trail.

If 20 people show up, it's a success.

"I just want to make it where everybody and anybody can participate," she said.

Jennifer is planning a two-mile walk.

"If you don't have a reason to walk in this Care Walk, you won't," she said. "People aren't going to come out unless they have a connection."

Many people may have a connection and not even realize it.

A deep connection

Jennifer and her husband, Scott, a teacher in the Skaneateles Central School District, welcomed their daughter Sophia into the world in February 2009. Consequently, they were also faced with raising a child affected by the blood disorder that less than 1,000 people in the U.S. suffer from.

Before the couple got pregnant, no one ever told Jennifer they should have genetic testing since both are carriers of thalassemia due to their Italian heritage. The disorder primarily affects people of Mediterranean descent.

"It's really an epidemic over there. They can't get the proper treatment over there that they can in the U.S.," Jennifer said.

According to the Cooley's Anemia Foundation, beta-thalassemia major is the most severe form of the disorder and prevents or greatly reduces the body's ability to produce "adult" hemoglobin and causes anemia. Sophia is missing one of the ingredients to make normal adult hemoglobin, which is part of the red blood cell.

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