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Chromosome Disorders

 

Network21

Network21 is a parent-run network of families with Down syndrome in Central New Jersey.  This group connects and supports parents, caregivers, and individuals with Down syndrome.  Network21 identifies and shares resources that can better provide for the needs of individuals with Down syndrome in our community.  Network21 is affiliated with the National Down Syndrome Society, the National Down Syndrome Congress and The Arc of Middlesex County.  Network21 advocates for and supports organizations that promote acceptance of people with Down syndrome and other disabilities and work to better the lives of people with DS.  

 

Network21 encourages new and expectant parents who have been given a diagnosis of Trisomy 21 to contact one of our board members for information and support: 

Jennifer Robertson, President (mjrobertson510@gmail.com / 908-309-1588)

Kim Taylor, Vice President (kim.taylor@earthlink.com / 732-610-8451)

Lauren Hurley, New Parent Outreach (hurleyml61@optimum.net / 908-510-2730).

 

 

 

 

New York Tri-State Regional Support Group for X and Y Chromosome Variations

The New York Tri-State Regional Support Group for X and Y Chromosome Variations services individuals and families in New Jersey, New York and Connecticut impacted by Klinefelter Syndrome (47,XXY), Trisomy X (47,XXX), 47,XYY and other variations such as 48,XXYY and 49,XXXXY.  The group meets twice annually in the spring and the fall, usually at Long Island Jewish Hospital, but occasionally at other locations.  

 

Group leader:  Ginnie Isaacs (hughes0022@yahoo.com / 631-655-5329)

 

This support group is a chapter of KS&A, the international organization dedicated to helping individuals with extra X and Y chromosomes and their families to lead full and rich lives.  KS&A has a website, www.genetic.org, with extensive information on these common supernumerary chromosomal conditions, as well as a hotline (888-999-9428) staffed by a professional social worker and trained volunteers to provide information and support to newly diagnosed and prenatal diagnoses.  The website features webinars on a variety of topics, as well as literature on the various conditions.  A family conference is held every other year. 

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