Health & Wellness

Increasing Awareness of a Rare Disease – Dup15q

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Holden Weissberg Credits: Team Weissberg
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SPRINGFIELD, NJ - At Tuesday’s Township Committee Meeting, a “Request from a Springfield resident for complimentary usage of Chisholm Community Center gym on Saturday, September 16, from 10 a.m. to 3 p.m., to host a fundraiser on behalf of her son to benefit the Dup15qAlliance” was approved.  The action item was motioned by Committeewoman DuBois and seconded by Committeeman Huber.  All members of the Township Committee voted in favor.

Lauren Weissberg is the Springfield resident.  She and her husband Marc have two sons, Reid and Holden.  Holden is three years old and on May 16, 2016, he was diagnosed with Dup15q syndrome.  That means he has an isodicentric duplication of his 15th chromosome.  If you have not heard of it, do not be surprised, there are only about 1,000 people with Dup15q.  The disease is not well known or researched and to date, there is no cure. 

The Weissbergs are working parents balancing full time jobs, raising a family and also coping with the challenges of raising a child with a very rare disease that is not well understood and lacks well established and effective treatments.  They approach the challenge as “Team Weissberg” and get a great deal of support from many in the Springfield community and beyond it.  Their sources of strength include their faith and determination to increase the visibility of the disease in hopes it will lead to better treatment and eventually a cure.

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They have increased visibility through the media and fund raisers.  Their first fund raiser took place last September at CKO Kickboxing in Springfield (http://www.ckospringfield.com/).  Some participants paid $15 for a kickboxing lesson and they along with others participated in a silent auction consisting of 75 different baskets donated by members and businesses of the community.  A total of $9,600 was raised for the Dup15q Alliance. 

The Dup15Q Alliance was created (http://www.dup15q.org/ to help better understand the disease. From its website, “Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome.” Lauren says, “The motto of Dup15q is Believe.”

Lauren expects the fundraiser at the Chisholm Center to raise more money, perhaps $15,000.  The Chisholm event will include another silent auction of baskets.  She also hopes to have more baskets donated, perhaps as many as 100.  Participants at the event will be able to join in a dance class and maybe Zumba.  Tickets to the event will be $15.

Before September, Lauren helped organize a smaller fund raiser with the Union School District that is part of an international effort.  It is called Rare Disease Awareness Day and will be held on February 28.  It is a dress down day and contributions of $5 are suggested.  Lauren is a Counselor and Union High School.  She is also thinking of partnering with CKO again and doing another boxing class. Also, there will be an NJ Walk for Dup15q in October.

Believing is aided by getting people to better understand the disease and the pressures it places when any family member gets a rare disease.  Lauren said “The people of Springfield have been wonderful.  The friends we have made here have been an incredible source of support.  We hope we never have to leave.”

When Holden was born everything seemed fine.  According to Lauren, Holden slept through the night unlike his big brother Reid who woke up almost every night the first two years.  What concerned Lauren and Marc was Holden was missing his “developmental milestones”.  When he was about a year old, they visited the pediatrician who noted Holden was not pulling to stand and recommended that if he was not doing that or crawling by the 15 month, Holden be given a physical therapist (PT) evaluation.

The PT evaluation was done at 17 months in June 2015 and Holden was diagnosed with hypotonia.  He could not crawl or stand and he still does not speak.  That PT evaluation was the beginning of a series of tests and diagnosis leading to this point.  Last February, Holden was diagnosed with Cerebal Palsey, but that was changed with the diagnosis of Dup15q in May.  Then last November, Holden was also diagnosed with Autism Spectrum Disorder, Sensory Processing Disorder, global developmental delay, and mixed expressive receptive language disorder.  Currently, Holden’s developmental age is that of approximately a 1 year old.

On December 16, 2016, Holden was deemed eligible for special education and just started attending for a full day on his third birthday.  The Springfield School System was very helpful in getting Holden into the appropriate system according to Lauren.

According to the National Institute of Health, there are 7,000 rare diseases, or almost one in ten Americans.  They affect between 25 and 30 million Americans.  Rare diseases are ones that affect fewer than 200,000 people.  Half of rare diseases affect children. 

February 28 is Rare Disease Day 2017.  It is an international affair.  The USA joined the effort in 2009, which marks its tenth year in 2017.  In 2016, more than 80 events were held in 35 states for Rare Disease Day.  This is a link to the website - http://www.rarediseaseday.org/article/about-rare-disease-day  

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