Carolyn Levering, Port Washington resident and CEO emeritus of The Marfan Foundation, is being honored with The Marfan Foundation’s 2015 Hero with a Heart Award. The presentations will be made at the 15th Heartworks Gala on April 16 in New York City.
The Marfan Foundation is honoring Levering for her 20 years of service as president and CEO. Levering grew the foundation from a small grassroots support organization to a vital nonprofit health organization that helps improve the lives of the 200,000 people with Marfan syndrome and related disorders in the U.S.
Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. It affects the heart, blood vessels, bones and eyes.
Levering has lived in Port Washington for 27 years. She and her husband, Jim, and son, Matt, moved to Port when her son was two and a half years old. Levering left a full-time job to raise her son and got involved in many Port Washington organizations. She was president of the Roslyn Trinity Co-op board, on the board of the Community Chest, involved in The Children’s Center, the Beacon Hill Women’s Club and the PRC.
“Port Washington is a great community to get involved in,” said Levering. “There are so many opportunities in Port to connect in a meaningful way in the community and school.” Levering was very involved in Daly school when her son was a student there. Her son went through Port schools and graduated from Schreiber High School.
She became involved with the The Marfan Foundation through friends she made in Port Washington. “I was in a women’s group and one of the women worked at the Port Library with Priscilla Ciccariello. Ciccariello was a research librarian and head of The Marfan Foundation,” said Levering. “Priscilla wanted to continue as chair of the foundation, but was looking for their first chief executive. Priscilla had seven sons, and the eldest died of Marfan syndrome while still in school. They didn’t know he had it. Two of her remaining sons and her husband were then diagnosed with Marfan. Priscilla got involved because of that. She’s almost 90 now and lives in Sag Harbor. But, that’s how the national office came to be in Port Washington.”
When Levering started at Marfan, it was in a tiny office in the Community Chest building. “I had a big vision in that office. I would look out over Louie’s and see the water and the world, and I had a big vision for the foundation,” said Levering. Six years later, they outgrew the office and moved into a building in Manhasset Isle. “We had a generous donor and a wonderful designer who did a great job on our offices. This is the national office of The Marfan Foundation. Port is our home.” The Marfan Foundation just hosted an international research meeting in Paris, but Levering has no plans to leave Port Washington now. “We plan on traveling a lot, but we’re staying put in Port,” said Levering.
“Port Washington is a welcoming community, perfect and fun for getting involved in,” said Levering. “This opportunity happened for me through the talented and wonderful women I met volunteering in Port. There is a rich opportunity to tap people in town, which I did as well.”
The Heartworks Gala has raised more than $10 million for The Marfan Foundation to date. The gala is being held at Cipriani 42nd Street. Former New York City Mayor Michael Bloomberg has been the honorary chairman for 13 years. “We are thrilled to have him,” said Levering. The gala will also honor Baylor University’s Isaiah Austin, who was diagnosed with Marfan syndrome shortly before the 2014 NBA draft and has since become a spokesperson for the foundation.
The Marfan Foundation will also hold its second annual Walk for Victory on May 2 at Syosset-Woodbury Community Park. For information about the Marfan Foundation, go to www.marfan.org.
