Walk to raise awareness of Cooley’s anemia comes to Clove Lakes Park

[Editor’s Note: Post originally appeared on SILive.com, where I was a breaking news intern from January to August 2016.]

About 50 people braved the rain Sunday and walked in Clove Lakes Park to raise awareness of Cooley’s anemia.

The Care Walk Cooley’s Anemia Foundation has been in existence since 1985 and has organized the walk on Staten Island for the past five years.

“The people who came are just amazing, dedicated volunteers,” organizer Cammie Brandafino said.

Brandafino, of Willowbrook, noted that her daughter has Cooley’s anemia.

“It goes to show you that when people support you anything can be done,” she said.

Cooley’s anemia, or thalassemia, is a rare blood disease. Those who suffer from it must rely on blood transfusions and medication to live. About two million Americans carry the trait for the disease without even knowing it, according to the Cooley’s Anemia Foundation.

Brandafino’s daughter, Danielle, has to go for transfusions every two to three weeks and has to wear a pump that infuses a chelator for eight hours each night. And being that there’s no cure just yet, one of the things the foundation advocates for are blood drives.

“We want there quality of life to be a lot better than it is today,” Brandafino said. “They can’t live without transfusions. Our kids need blood. They all have to survive.”

Lynda Saulle, of New Dorp, who has had Cooley’s anemia since she was born, participated in the walk to not only raise awareness about the disease but also to honor her sister and best friend who died from the disease.

“It’s rough,” Saulle said about living with the disease, “but you got to take what God gives you and make the best out of it.”

For more information on the disease visit the Cooley’s Anemia Foundation website.

About Jonathan Reyes

I joined the Daly Dose Of Hoops staff in the fall of 2016 and am the beat writer for Wagner College and the Northeast Conference. I'm also the editor of this here website, WerdyNerdy Space, and a contributor to The GWW. My background in journalism started as a sports intern for the Riverdale Press and News 12 The Bronx/Brooklyn and as a breaking news intern at the Staten Island Advance/SILive.com. I graduated in 2016 from Manhattan College with a Bachelor of Arts degree in communications, concentration in journalism. While in Riverdale, I wrote for Manhattan's student newspaper, The Quadrangle, where I began as a staff writer before becoming assistant sports editor, sports editor and senior writer. During my time at the Quad, I earned Manhattan's Excellence in Journalism, Best Sports News Article and Most Prolific awards, including nominations for eight similar awards in my four years.
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