UNION, NJ – Union school district staff will honor Rare Disease Day with a dress down day on Friday, Feb. 28, to support the Dup 15q Alliance. One hundred percent of the funds raised will be donated to the Alliance.
Holden Weissberg, son of Union High School Counselor Lauren Weissberg, was diagnosed with Dup15q Syndrome on May 16, 2016 at age two. Dup15q Syndrome is a rare genetic disorder that impacts approximately 1,200 people worldwide. From the moment they received Holden’s diagnosis, Weissberg’s family has worked to raise money and awareness to support research and treatment for all families impacted by Dup15q.
Weissberg sits on the Board of Directors of the Alliance and said her husband has done much volunteer work and will be on the Conference Committee for the 2021 Family Conference. She said her oldest son, Reid, 8, has raised over $1,500 with a Spartan Race as part of the Dup15q Alliance's "Run for a Reason" program. Reid is also the "Mini Executive Director" and will be joining the Junior Believe Committee, which supports siblings within the Dup15q Alliance.
Weissberg asks readers to post photos of themselves wearing blue on Saturday, which is the official Rare Disease Day, to their social media accounts with the hashtags: #bluefordup15q #holdensheroes #hopeforholden
Holden's direct link for donations is: https://dup15q.networkforgood.com/projects/78631-hope-for-holden
Dup15q Syndrome is characterized by having an extra copy of a portion of chromosome 15 in the 11.2 – 13.1 region in combination with a number of symptoms that may include hypotonia, epilepsy, cognitive delay or impairment, motor delays, and autism. Holden has all of these symptoms, and a whole host of others, as a result of his Dup15q diagnosis.