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 Port Washington, NY - Twenty women from Chappaqua are teaming up to chair the first Heartworks Westchester gala, a benefit for the National Marfan Foundation (NMF) in honor of four-year-old Sydney Lerman.
Sydney, who is the daughter of Barbara and Jonathan Lerman of Chappaqua, was diagnosed at birth with a very severe form of Marfan syndrome, a potentially life-threatening disorder that affects the heart and blood vessels, skeleton, and eyes.
Heartworks Westchester is an offshoot of the successful flagship event in Manhattan, Heartworks, which last year raised $1.2 million for the NMF. Each year, the New York City event features top performers, such as Broadway stars Patti Lupone and Mandy Patinkin. Mayor Michael Bloomberg is the honorary chair of the event and Ann Reinking, the Tony Award-winning choreographer and actor, is the artistic chair. The goal of the Westchester benefit committee is to replicate the success of Heartworks in Westchester to garner even further support for the NMF’s programs and initiatives.
The Westchester benefit will be held at the Metropolis Country Club in White Plains on May 29 at 7 pm. There will be a cocktail reception and a silent and live auction. Tickets, which are $250 each, are available by calling 516-883-8712. A limited number are available.
The hosts of Heartworks Westchester are Barbara and Jonathan Lerman, along with Sydney’s grandparents, Susan and Laszlo Serenyi, of Forest Hills, Queens, and Judith and Jerry Lerman, of Manhattan.
The honorary committee chairperson is Donna Litvinsky, of Croton-on-Hudson, and Sydney’s eight-year-old sister, Carly, serves as Honorary Junior Committee Member. News 12 Westchester is the presenting sponsor.
The women who comprise the benefit committee came together in support of the Lerman family, after watching them go through the various ordeals that Sydney has endured throughout her young life.
“The Lerman family has demonstrated immense courage as they have dealt with one medical challenge after another brought on by Sydney’s Marfan syndrome,” said Carolyn Scarbrough, a benefit committee member from Somers. “The strength of our community lies in what we give to others in their time of need. We have been here for the Lermans and, as mothers, the benefit committee members want to do all we can to support the thousands of other children, like Sydney, who have Marfan syndrome. Through this gala, we hope to raise $150,000 for the NMF’s life-saving programs.”
The other benefit committee members are:
Meri Alexander, Chappaqua; Stacy Carr, Katonah; Amy Knox, Chappaqua; Amy Leibner, Bedford Corners; Donna Levitz, Chappaqua;Jodi Lichtenstein, Chappaqua; Marcie Meyer, Chappaqua; Dana Mutkoski, Chappaqua; Ayelet Pollner, Chappaqua; Stacey Remnitz, Armonk; Courtney Rothstein, Chappaqua; Amy Thomasas, Chappaqua; Robyn Troob, Chappaqua; and Marjorie Troob, Chappaqua.
“The NMF is grateful to this incredible group of women who are pooling their energies and resources to raise money for education, support services and research on Marfan syndrome,” said Carolyn Levering, NMF President and CEO. “They are determined to make a difference for Sydney and children like her all over the country. I have no doubt that the community will rally together with them to make their inaugural event a great success.”
Sydney’s Medical Journey
Sydney has faced overwhelming medical challenges since she was an infant. Diagnosed at birth with Marfan syndrome, physicians were aware of the risks to her cardiovascular system and monitored her. She was only five months of age when she underwent her first major heart surgery.
On August 5, 2005, while attending the National Marfan Foundation’s Annual Conference in St. Louis with her family, Sydney went into severe heart failure. She was immediately admitted into St. Louis Children’s Hospital and placed on a bypass machine. Her only hope for survival was a heart transplant. Miraculously, a heart was found for Sydney only seven days later.
“Our experience in St. Louis was surreal. We truly could not believe what was happening. We could only wait and hope by Sydney’s bedside,” said Barbara, her mother. “Our prayers were answered when she received the new heart, but the following months of recovery were filled with tremendous ups and downs. Through it all we never lost hope. We knew deep down that Syd was going to pull through. On October 31, nearly three months after our incredible journey in St. Louis began, we all flew back to New York as a family. Sydney had survived this incredible ordeal and we all went home.”
Sydney’s medical struggles did not end in St. Louis; just last year she had to endure major back surgery.
“We know she is receiving the best medical care possible, but is still difficult,” said Jonathan Lerman. “We are so grateful for the unbelievable support we continuously receive from our family and friends in Westchester; they are here for us every step of the way.”
Marfan Syndrome and The National Marfan Foundation
Marfan syndrome is a connective tissue disorder that affects the heart, blood vessels, eyes, bones, joints and lungs. It is often, but not always, characterized by a tall stature and disproportionately long legs and arms. Other skeletal manifestations are curvature of the spine, a protruding or indented chest and loose joints. The most serious problem associated with Marfan syndrome is its effect on the aorta, the main artery carrying blood away from the heart.
The aorta is prone to progressive enlargement, which can lead to tears in the aortic wall that require surgery. If aortic enlargement and tears are left undetected, the aorta may rupture, leading to sudden death.
The life expectancy for people with Marfan syndrome who are diagnosed and treated is now in the 70's due to advances in cardiovascular surgery, increased options in medical therapy and better diagnosis. Without a proper diagnosis and medical management, they are at risk of aortic dissection and sudden death.
This was the tragedy that struck the Tony Award-winning RENT playwright Jonathan Larson, who grew up in White Plains. Larson went to two New York City hospital emergency departments complaining of chest pain and was discharged both times with an incorrect diagnosis. He died alone in his apartment of an aortic dissection believed to have been caused by Marfan syndrome. He was 35 years old.
Research on Marfan syndrome is ongoing and a breakthrough study has identified a commonly prescribed blood pressure medicine, losartan (Cozaar), that prevents and may even reverse the potentially fatal weakening of arteries in mice with Marfan syndrome (Science, April 7, 2006). The National Institutes of Health has launched a clinical trial to study this medication in people with Marfan syndrome.
Losartan has also been shown to positively impact the muscle degeneration in mice with Marfan syndrome, providing further hope for the Marfan community and underscoring the need for extensive research on losartan and how it may impact the various body systems affected by Marfan syndrome.
Approximately 200,000 people in the U.S. have Marfan syndrome or a related connective tissue disorder. In most cases, the condition is inherited; one-quarter of people with Marfan syndrome are the first in their family to be affected.
The National Marfan Foundation is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life of individuals and families affected by the Marfan syndrome and related disorders by:
Educating affected individuals, family members and the health care community about the Marfan syndrome.
Advocating for and funding clinical and molecular research into the early detection and treatment of Marfan syndrome.
Providing a network of local and special-interest support groups to help affected people and their families share experiences.
For more information on the Marfan syndrome, contact the NMF at 800-8-MARFAN or visit the NMF’s web site at www.marfan.org.
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