Education

Union Teachers to Rally on Rare Disease Awareness Day in Support of Dup15q Syndrome, Cioffi's in Springfield has a Raffle to Show Support

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Holden Credits: Lauren Weissberg
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Joey Cioffi with special t-shirt Credits: Chip Dickson
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UNION, NJ – February 28th is Rare Disease Awareness Day and teachers in Union are pitching in by wearing jeans and a blue shirt and donating $5 to '“RARE” your BLUE for Dup15q' Day.

Union High School Counselor Lauren Weissberg is sponsoring the district-wide dress down day in support of the Dup15q Alliance and her son Holden, who is diagnosed with the rare genetic disorder Dup15q Syndrome.

Cioffi’s Fine Italian Food & Imported Products is also pitching in by holding a raffle to win a “Whole Family Pizza Making Experience".  The cost of a raffle ticket is $15 and all the proceeds will be donated to the Dup15q Alliance.

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Cioffi’s is offering a chance for a family of up to five people to come in and make pizzas with their chef. Each entry is $15 and 100 percent of the proceeds will be donated to the Dup15q Alliance.

“In May 2016, my son Holden was diagnosed with Dup15q, a rare genetic disorder that impacts approximately 1,200 people worldwide,” said Weissberg.  “From the moment we received the diagnosis, our family has worked tirelessly to raise money and awareness to support research and treatment for all families impacted by Dup15q.”

The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.  The campaign seeks to raise awareness among policy makers, public authorities, industry representatives, researchers, and health professionals.

People with Dup15q Syndrome have extra genetic material from chromosome 15, which causes a variety of symptoms including autism, seizures, developmental delays, low muscle tone, and cognitive impairment. The Dup15 Alliance supports and educates the families of people with Dup15q Syndrome and support research and efforts to develop targeted treatments to help anyone living with Dup15q Syndrome reach their full potential.

“This has been an eye opening and life changing experience for our entire family,” said Weissberg.  “Oftentimes, Holden’s challenges are overlooked because ‘he looks so normal’.  Though you try to explain that Holden may never function beyond that of a 5 year old, and that’s if we are lucky, it seems to be hard for other people to process.”

“Our family truly believes that research is the key to infinite possibilities and we hope and pray every day that these trained medical professionals will make a breakthrough that will improve the quality of life for our son Holden and all of his Dup15q brothers and sisters,” said Weissberg.  That is why we continue to hold events and will continue to work tirelessly to raise money and awareness.  We need more people to know about Dup15q and help us fight for our cause.”

To find out more or to donate, visit  www.dup15q.org/holden-s-heroes

 

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