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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.

Pregnancy



	Patient Support Groups in New Jersey Disclaimer: This listing is not all-inclusive of patient support groups throughout New Jersey. Inclusion in this list does not imply endorsement of these groups by HGANJ. Genetic disorders Chromosome disorders Pregnancy Genetic disorders The Turner Syndrome Society of the US / New Jersey Chapter The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and develop programs for education - information - support, which will increase professional awareness and enhance medical care of those affected by Turner syndrome. Early diagnosis and comprehensive treatments over the lifespan will lead to a brighter and healthier future for all young girls and women with Turner syndrome. TSF is a registered 501(c)3 organization incorporated in New Jersey, EIN #27-1409942. www.TurnerSyndromeFoundation.org Turner Syndrome Foundation, Inc., P.O. Box 726, Holmdel, NJ 07733 / 732-217-3021 / Toll Free: 800-594-4585 / Fax: 800-594-3862. Fragile X Syndrome Association of New Jersey The FXANJ is an association of families and professionals dedicated to improving the lives of those living with Fragile X syndrome. For more information visit http://www.fragilex.org/html/new_jersey.htm. My Genes, My Risk My Genes, My Risk is a support group designed for people at high risk of cancer due to their genetic status and their family members who wish to learn more. For more information or to register, please contact Dana Farengo Clark at 856-325-6716 or call 1-800-8-Cooper. This group meets in Voorhees, NJ. 2013 meetings are scheduled for 6:00-7:30pm on April 23 and October 1. New Jersey Rett Syndrome Association The goals of the New Jersey Rett Syndrome Association (NJRSA) are to contribute towards an improved quality of life for girls and women affected by Rett Syndrome, raise awareness of the disorder and support research for a treatment and cure. By raising the awareness we foster public attitudes conducive to early intervention, treatment, support and research of Rett Syndrome. NJRSA is a 501(C)3 organization. For more information visit www.njrsa.org. 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. www.dsnetwork21.com 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. Pregnancy The Time for Healing The Time for Healing is a support group for those who have ended pregnancies for fetal ultrasound or genetic testing abnormalities. This group generally meets monthly on a Sunday evening in Hamilton, NJ. Coordinators are Denise Richardson, RNC, and Dee Lewis, MA, MS. Potential members can contact Dee Lewis at (609) 394-4026 for more information. HART (Healing And Recovering after Termination) HART is a group is for people who have ended pregnancies because of fetal abnormalities. This group meets in Long Branch, NJ. Please call (732) 923-6526 for more information. F.A.T.E. (Feelings After the Termination Experience) F.A.T.E. is a support group for individuals or couples who have ended a pregnancy due to a fetal abnormality. The group meets on Wednesday nights at Overlook Hospital in Summit, New Jersey. Contact for more information: Gisela Rodriguez ((973) 972-3302 / rodriggi@umdnj.edu) or Christina Botti ((732) 235-6350 / armelich@umdnj.edu). AFTER AFTER is a group for people who ended a pregnancy with a genetic disease or congenital anomaly. This group meets in Hackensack, NJ. Call (201) 996-5264 for more information.