This is a tri-state group, serving Nebraska, Iowa and Missouri, based in Omaha.
To All Persons Interested in XXY:
It is estimated there are more than 1,000 individuals in Nebraska that may have a genetic variation that includes an extra X or Y chromosome. Less than 25% of these individuals have been diagnosed accurately and even fewer are receiving appropriate health and educational support. As a result, many people and families face difficult challenges in finding information and services that could make a significant improvement in their lives. My wife and I have personal experience with this since our 27 year-old son was not correctly diagnosed until age 24 with 47,XXY (otherwise known as Klinefelter Syndrome). We spent many years and thousands of dollars trying to find out what was causing his learning, behavior and health issues and endured a lot of unnecessary pain and problems until we finally obtained this diagnosis and were able to initiate appropriate treatment
There is a national organization that is available to help. This group is called AXYS (Knowledge, Support and Action, www.genetic.org ) and we have started a local support group in Nebraska to provide opportunities for people to come together to learn more about these conditions and find help. I would like to invite you to attend our second support group meeting on Saturday, March 31, 2012, from 11am until 12:30pm. The University of Nebraska Medical Center has offered to provide us with meeting space at the Munroe Meyer Institute, Room 3046, on the UNMC campus and we will be happy to send you a map for the location if you will RSVP with your name and email address.
Click for online Map
Click for campus map and directions to the meeting
We sincerely hope you are able to attend and meet other individuals and families dealing with X and Y chromosome variations. This will be a very informal event with open discussions and sharing of information. Our intent is to answer questions, identify resources and finalize arrangements for future support group meetings that would include guest speakers. We also plan to become more active in finding ways to help politicians and medical and educational professionals in Nebraska become more aware of the number of people with X and Y chromosome variations and the unmet needs of this population.
There is no cost to attend the meeting. You are welcome to contact me personally with any questions you may have and can confirm your attendance by sending me a message at my email address, email@example.com or by calling me at 402-681-5455.
If you are not receiving our email notices, send email to firstname.lastname@example.org and ask to be added to the Nebraska Support Group list.
Member, AXYS Board of Directors
Contact: Gary Glissman