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Fighting Marfan Syndrome One Step At A Time

  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.”Marfan052015B

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.”marfan052015A

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.

 

Good Run Comes To An End

Schreiber varsity lacrosse team ready to play

Schreiber varsity lacrosse team ready to play

The third seeded Port Washington Vikings lost a tough one on a chilly late afternoon matchup against the second seeded Syosset Braves 14-7 when the two teams met at Hofstra University’s James Shuart Stadium in front of a hyped crowd on Wednesday, May 20. [Read more…]

Weber Phys Ed Teacher To Retire

Francine Clark of Weber Middle School retires

Francine Clark of Weber Middle School retires

The weather is changing and the sound of the final school buzzer is looming. For Weber Middle School physical education and health teacher Francine Clark, it is time to close the books. [Read more…]

Ride For A Cause

Riders starting out at the LIRR station

Riders starting out at the LIRR station

Close to 200 riders participated in the fourth Annual Lauri Strauss Leukemia Foundation Ride on Sunday, 17, for either a 3.3, 14 or 21 mile bike tour. The event raised over $30,000, with donations still coming in. The majority of the funds will be disbursed towards research to help find cause and cure for leukemia and related cancers. [Read more…]

Varsity Lacrosse Advances To Semi-Finals

The Schreiber High School boys varsity lacrosse team has advanced to the semi-finals in their bid for the county championship. After a 13-10 win against Oceanside in the first playoff round, they are now set to meet Syosset in the semi-finals.LacrosseSemiFinals_052015A

The Vikings’ regular season ended with a 12-3 record, putting them in third place in the Nassau County Class A Conference, their best record in more than a decade.

The team will compete against Syosset this Wednesday, May 20, in the next round of playoffs. The game kicks off at 5:30 p.m. at Hofstra’s Shuart Stadium.

The Port Washington lacrosse booster tent will be set up for a potluck tailgate. People are encouraged to bring food and drinks to share. Those attending will meet in the parking lot to the left, off Gerald Street (stadium entrance) between 4 p.m. and 4:30 p.m., wearing Port BLUE with pride. Come to cheer and support the boys in what should be a very exciting game!

 

Port Rowers Head To Nationals

Friends of Port Rowing teams made a very strong showing at the N.Y. State Championships in Saratoga Springs on May 9 and 10.

The teams earned Gold Medals in Girls 2-, Boys Junior 4+, and Boys Freshman 4+. The Girls Lightweight 4+ earned a Silver medal and qualified for a coveted spot to row at the U.S. Rowing Youth National Championships in Sarasota, Florida from June 12-14.

The Girls Lightweight 4+ team (from left): Ashley Meyer, Jess Sims, Molly Alstadt, Coach Darren Gary, Maddy Lavin and Eva Tamkin

The Girls Lightweight 4+ team (from left): Ashley Meyer, Jess Sims, Molly Alstadt, Coach Darren Gary, Maddy Lavin and Eva Tamkin

Port Rowing is a community based rowing program located in Port Washington that fosters the sport of rowing in teenagers and adults on the North Shore of Long Island. Friends of Port Rowing is a 501(c)(3) not-for-profit organization established in 2010 to promote rowing in waters surrounding Port Washington.

 

Varsity Lacrosse On Top

Junior goalie Nick Ferrero makes the save

Junior goalie Nick Ferrero makes the save

The Schreiber varsity lacrosse team concluded their last home game of the season with a 17-13 win over Hicksville on Thursday, May 7. It was a great way to end the season with a victory in front of a big crowd on Seniors Day with 17 team members who will be graduating in June. [Read more…]

Donate Bikes at PortFest

If you have a bike of any size in good working condition that you don’t want anymore, you can donate it to a good cause at PortFest on May 16. Bikes for the World is an organization that collects bikes to be distributed in countries where they are an important part of daily life.KennyMarx050615C

Zach Marx is a Weber student who has embraced the cause as part of his bar mitzvah project at the Reconstructionist Synagogue of the North Shore (RSNS) in Plandome with the assistance of his father, Kenny Marx, and Larry Silverman. Kenny, Zach and Larry have created the New York chapter of the organization to open up the New York metropolitan area as a valuable channel for Bikes for the World collections.

Kenny Marx has partnered with Damon Gersh, founder of PortFest, to make PortFest a collection point for the bikes. “We have tagged PortFest as our milestone collection date given the nature and timing of the event,” said Marx. “We’re trying to spread the word to folks to bring their used bikes to PortFest.”

Collections will take place at the Schreiber KennyMarx050615BHigh School campus. The donation of any bike is fully tax deductible for the value of the used bike. “Bikes of the World will be set up on the pathway as you enter PortFest from the parking lot. If you bring a bike, you will get paperwork for a full tax deduction,” said Marx. “The bikes will be loaded on the truck right there in the parking lot.”

Bikes of the World collect the bikes, transports them to the D.C. area, and then they are shipped to where they are needed. So far they’ve collected 100,000 bikes around the world. “When I realized how much a bike can change a person’s life, it really hit a chord with me,” said Marx. “Bikes for the World’s mission is to distribute used bicycles in Africa, Asia and Central America to transform lives by providing the means to travel to school, jobs and receive healthcare. Bikes for the World has distributed over 100,000 bikes to date by partnering with local organizations to help disadvantaged people improve their lives.”

Marx, who grew up in Great Neck, has two sons, one at Weber and one at Schreiber. “So clear out your garage and help Bikes for the World change lives, one bike at a time,” said Marx. For additional information or questions, contact Kenny Marx at KennyMarxbikes@gmail.com.

 

Varsity Track: Off To The Races

With the outdoor track season in full swing, the Schreiber High School Track and Field squads have been preparing for an exciting weekend at the Penn Relays. The University of Pennsylvania played host to this event from April 23 to April 25. Both teams were looking to represent Port Washington in one of the most competitive high school competitions in track and field. Coach Nicole Dumpson led the boys on their second consecutive trip while Coach Jeremiah Pope and the girls team competed for their fourth straight year.

Boys and Girls 2015 varsity track teams with Coach Nicole Dumpson, Coach Jeremiah Pope and Assistant Coach Arnold Donado

Boys and Girls 2015 varsity track teams with Coach Nicole Dumpson, Coach Jeremiah Pope and Assistant Coach Arnold Donado

[Read more…]

Row For Autism

The Town of North Hempstead and Friends of Port Rowing’s 4th Annual Row for Autism Regatta on April 18 at North Hempstead Beach Park. Since 2012, the event has raised funds for Port Rowing’s adaptive rowing program and for Autism Speaks, the autism advocacy organization. The adaptive rowing program partners rowers with special needs, including autism and physical disabilities, with ablebodied peers. Participants row in practice and competition events.RowForAutism_042915A

Pictured at the event are (L-R) Adam Seider, Justin Leu, and Lucas Cowen of Port Washington High School Rowing, Dimitri Kessaris of Manhasset, Peter Rooney of Port Washington High School Rowing, Nassau County Comptroller George Maragos, Kristel Morreale, Nick Papadolpoulos, and Michael Machman and Nicole Rosenberg of Port Washington High School Rowing.