AXYS News & Newsletters

/AXYS News & Newsletters
AXYS News & Newsletters2018-08-01T12:57:05+00:00

News About AXYS and the X & Y Variation Community

Officials Make Birthday Dreams Come True

Walp told NewsChannel 5 that Dayton has a rare genetic disorder called 48,XXXY syndrome and added he has also been diagnosed with autism.

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Extraordinary Care: Families have a place to turn for help with sex chromosome disorders

“Shy at first, Emma warms up quickly when Sharron Close, the pediatric nurse practitioner at the eXtraordinarY Clinic at Emory, notices the doll she’s holding.”

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Dad to Cycle Over 200 Miles to Raise Awareness of Genetic Variation Which Affects His Son

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Sheryl Kelly Joins AXYS Board

Parent and attorney Sheryl Kelly was recently voted onto the AXYS Board of Directors. Sheryl has already been very active in and supportive of the AXYS advocacy efforts and her more formal role will now only add to the knowledge and insight she brings to our mission. Sheryl and her family have also been financially supportive of AXYS and you can learn more about their most recent matching grant here.

Bregante Matching Grant Reached

Thanks to the generosity of the Bregante family, and our many generous donors, AXYS has matched the $5000 grant provided by the Bregante’s. This $10,000 will go a long way in helping us improve our informational and educational materials with an emphasis on services for adults. Learn more about the Bregantes here.

A Boy Named Matthew

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Oconomowoc Teen’s Letter-writing Campaign Compels Governor

Alexis Rakowski of Oconomowoc, whose younger brother Jason has a chromosome variation known as 48 XXYY Syndrome, led a letter-writing campaign to get Gov. Scott Walker to recognize May as X & Y Chromosome Variation Awareness Month.

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New Chromosome Clinic Offers Hope

Nemours launches a new program for kids with X and Y chromosome disorders.

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News Story:  Medical Advances Help Those with Klinefelter Syndrome

TWC News – 7/9/14

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