Nicole Kramer is a leading force in the fight against Marfan syndrome. Her daughter was diagnosed with the disease and Kramer has put all of her energy into raising money for research to find a cure. Marfan syndrome is a life-threatening genetic disorder of the body’s connective tissue. It affects the heart, blood vessels, bones and eyes.
Nicole Kramer’s husband, Michael, was diagnosed with Marfan when he was nine years old. Her husband has had open heart surgery and two spinal surgeries recently. These surgeries were painful and had a long recovery. Their first child, a son, has no sign of the disease. Their daughter, Emily, was diagnosed at three weeks old. She is seven years old now. “The day I found out she had Marfan was the worst day of my life. It was difficult for me to come to terms with,” said Kramer. “I couldn’t talk about it. It was very difficult for me to grasp. I was upset for a long time.”
“We attended our first Marfan conference three years ago and it changed our lives,” said Kramer. “I became active with the foundation over the past 2½ years. I became involved with the foundation to help find a cure someday.”
The Marfan Foundation’s national office is located in Port Washington. Carolyn Levering, emeritus CEO of the Marfan Foundation, said “the Kramers came to the foundation seeking accurate, expert information to best manage the family’s diagnosis. They also were seeking a community of support. Having received that they became one of those exemplary families who genuinely and generously embrace the community and begin to give back. They already have raised meaningful awareness and funds and have become a model for others who are affected.”
“Carolyn Levering is a truly amazing person,” said Kramer. “She brought the foundation to a national level. And she provided us with a second family. It really helps to see and talk to others who are similarly affected. Carolyn is one of the main reasons I do as much as I do. It has been healing for me to meet all these people through the Marfan Foundation.”
The Marfan Foundation’s biggest gala, the Heartworks Gala, has raised more than $10 million for the Marfan Foundation to date. The gala was held at Cipriani 42nd Street this year. 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 also honored 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 held its second annual Walk for Victory on May 2 at Syosset-Woodbury Community Park. Team Kramer did the walk last year and raised $25,595 for the Marfan Foundation. This year, Team Kramer raised $25,316. In total, team Kramer has raised more than $50,000.
Nicole’s sister and brother-in-law, Kim and Jonathan Ciprian, are also actively involved in the cause. Jonathan was part of the foundation’s Team Victory in the 2014
New York City Marathon and Kim ran in the Long Island Half-Marathon on May 3 to raise money for the Marfan Foundation and raise awareness about Marfan syndrome. “We have a tremendous support system,” said Kramer. “This year we reached out to professionals in the field. Emily’s cardiologist came to the walk this year.”
In June, Emily’s school, Jennie E. Hewitt Elementary School in Rockville Centre, is donating funds from their annual walk to the Marfan Foundation in honor of the first grader. “The principal and student council supported a kid’s walk,” said Kramer. “There are 450 kids in the school and this gets all the families involved. We do what we can to educate as many people as we can about Marfan syndrome.” Both Nicole and her husband Michael grew up on Long Island. Nicole is from Valley Stream and Michael is from Lynbrook.
Marfan is diagnosed in many forms. There is a neonatal form, but some people are diagnosed as late as early adulthood, like Isaiah Austin. Sometimes it is the result of a spontaneous mutation. “My husband’s Marfan resulted from a spontaneous mutation,” said Kramer. “When he was conceived, there was a mutation so he is the first in his familial line with the disease. People with Marfan have a 50 percent chance of passing it on to their children.” It also comes in many different forms and different levels of severity. “We are trying to educate people about the symptoms and characteristics,” said Kramer. “People with Marfan syndrome need to be diagnosed to live with the condition. Otherwise, they are at risk of a sudden early death from a tear in their aorta, the large blood vessel that takes blood away from the heart. It’s essential to know the signs of Marfan syndrome and seek an evaluation if you have these signs.”
They are a family with a purpose, and a mission, and a drive to help all those who are living with Marfan syndrome and related disorders. For information about the Marfan Foundation, go to www.marfan.org.