September is Leukodystrophy month and Old Greenwich School’s Principal Jen Bencivengo did something novel for her longtime friend Allyson Buck on the school steps Friday afternoon.
Ms. Bencivengo and Allyson grew up down the street from each other in Guilford and both relocated to Greenwich. Allyson’s sons Sam and James attend Glenville School, and their older sister Imogen attends Western Middle School.
Sam was diagnosed with VWM, which is short for Vanishing White Matter Disease when he was just two.
On Friday Old Greenwich School participated in a “Pie Face Challenge” to raise funds for research for a cure for the rare disease.
“The bottom line is that this involves all of our community. It doesn’t matter if it’s Old Greenwich or Glenville. We’re all one community,” said Principal Bencivengo.
“Everyone has been really enthusiastic,” said Allyson Buck, Sam’s mother. “They did pie smashing events at Glenville School and North Mianus School.”
Buck said hopefully Western Middle School, where her daughter Imogen is in 6th grade, will follow suit.
“We are so grateful for everyone’s support. We need $1 Million to fund the research. There are only 250 people with VMS worldwide and pharmaceutical companies are not interested,” Buck said. “There are only two places in the world where research is being conducted – in Tel Aviv and Amsterdam. Both have found compounds that they think can stop the progression of the disease, thought it won’t undo the damage.”
During the event, Old Greenwich School families donated $7 because Sam turned 7 this month to raise funds for Vanishing White Matter Disease research.
Paper plates of whipped cream were lovingly smashed by teachers into each others faces on a beautiful afternoon.
The VWM Families Foundation is a 501 (c)(3) that Allyson Buck and her husband started and run to raise funds for research here in the US. www.vwmff.org/donate