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Chappaqua woman fights kids’ brain tumors By Danielle De Souza The Journal News October 13, 2008

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CHAPPAQUA – Amy Weinstein, 43, said she remembered when she heard the news that her 3-year-old niece, Samantha, had a brain tumor.

“My brother called me, and I was devastated, the whole family was,” said the Chappaqua resident. “I thought we live in America and we have the best doctors, but we realized there was no silver bullet that would take care of this. There was no research on it.”

So in 2005, on the anniversary of that awful diagnosis, Weinstein decided to stop feeling sorry for herself and make a change.

Weinstein is the founder and executive director of the Pediatric Low Grade Astrocytoma Foundation, an organization that helps fight and bring awareness to pediatric brain tumors. Her organization was chosen as the 2008 Neiman Marcus Christmas Book’s Charity of Choice.

“A friend of my brother approached the CEO of Neiman Marcus Direct and they decided to feature our organization,” she said. “The Westchester community has been very generous and reached out to try to get us support.”

Pediatric Low Grade Astrocytoma is the most common form of childhood brain tumor and the number one cause of solid tumor death in children. There are more than 20,000 children with PLGAs today and more than 1,000 children are diagnosed each year, according to the PLGA Web site.

Weinstein said there is scant research on the rare disease.

“Despite the fact tumors kill children, there is little research on how to treat these tumors or cure them,” she said. “The tumors are a form of brain cancer and the treatments of chemo and radiation they endure are painful, ineffective and extremely toxic.”

Andrew Janower, who is Weinstein’s brother and Samantha’s father, said his little girl has been through a great deal.

The 7-year-old had part of her tumor removed, but 20 percent remains on the bottom of her brain stem, the lower part of the brain where vital brain functions, such as breathing, take place.

“Samantha is stable now, but she has slow-growing tumors,” said the 39-year-old resident of Newton, Mass. “There is really nothing that can help her if they continue to grow.”

On a recent morning, Weinstein said her organization gives families hope.

In the last three years, the foundation has raised more than $6 million and she hopes that the Neiman Marcus catalog can bring in more funds.

The annual Neiman Marcus Christmas Book showcases extravagant and expensive fantasy gifts. This year’s catalog includes a limited edition 2009 BMW for $160,000 and a Dallas Cowboys Texas Stadium end zone for $500,000.

Donations to the organization will be made from the proceeds of the Christmas Book cover art collectibles that range from $35 to $70.

“All these families have left is hope,”Weinstein said. “This organization gives them back their belief.”

Janower had a message for the families dealing with the disease.

“Be strong,” he said. “We have to help doctors find treatments. We have to do this to help create a better future for our kids.”

 

 
Voices Against Brain Cancer is a not-for-profit public charity recognized by the IRS under 501 (c) (3)