Rockville Centre Father, Daughter Walk to Find Cure for Marfan Syndrome

Long Island residents are coming to Eisenhower Park in May to walk for a good cause: The Marfan Foundation.

Marfan syndrome is a rare genetic disorder that can be life-threatening if not treated properly. Those with the disorder are at risk of a sudden early death due to a tear in their aorta.

Rockville Centre resident Michael Kramer and his 7-year-old daughter Emily both live with Marfan syndrome. Kramer, who is a former firefighter at the Lynbrook Fire Department, is looking to raise money for The Marfan Foundation through the 2016 Tri-State Walk for Victory, which will be held Saturday, May 14.

“I personally have been through numerous surgeries as a result of Marfan Syndrome,” Kramer wrote on his FirstGiving page. “I've had open heart surgery, two back surgeries, chest reconstruction, and a few hernia surgeries.”

Kramer said The Marfan Foundation has been a big help to him and his family.

“The foundation has been a place to turn to for information, support, current research and most of all HOPE for a better future,” he wrote. “I am hoping to make the road of Marfan Syndrome a lot smoother for my daughter, Emily. I'd like for her to be able to live, to smile freely and not worry about what Marfan Syndrome will bring.”

Kramer has already surpassed his fundraising goal of $2,500, but the event has only raised $4,320 of its $75,000 goal. You can donate through Team Kramer or through the 2016 Tri-State Walk for Victory FirstGiving page.

On the day of the event, registration and check-in is at 12 p.m. and the 1-mile walk begins at 12:30 p.m.

All money raised will go towards funding research, providing patient support and conducting public and medical education to make sure that everyone affected is diagnosed and treated.

For more information on the walk, go here.

Image via FirstGiving