Why Support AXYS?

//Why Support AXYS?
Why Support AXYS?2018-10-11T08:50:11+00:00

This is only a part of what your investment in AXYS has helped to accomplish in recent years:

  • KS&A and AAKSIS merged to become AXYS. The XXYY Project joined with AXYS to become a project of AXYS.
  • Organized and launched the AXYS Clinic & Research Consortium (ACRC), comprised of eight hospitals across the U.S. It brought the leaders of the institutions together to foster increased collaboration.
  • Completely revamped our website to bring it up to modern web standards and make it even easier for families and professionals to find the information they need. (genetic.org)
  • Built a huge online library of published articles, videos, webinars and links to resources, made readily available to all visitors to our website.
  • Collaborated with the National Society of Genetic Counselors (NSGC) to sponsor a training presentation at its conference by Dr. Tartaglia and Susan Howell of the Denver Clinic and Dr. Pravin Rao of the Johns Hopkins Clinic.
  • Sponsored information and outreach exhibits at the NSGC and the Endocrine Society conferences.
  • Produced and distributed thousands of free Family Information Kits.
  • Produced new downloadable brochures suitable for newly diagnosed individuals and for sharing with medical, school and therapy professionals.
  • Produced an online, interactive FAQ and companion printable, condition-specific FAQs.
  • Supported research and distribution for the landmark guidebook, “Living with Klinefelter Syndrome (47,XXY) Trisomy X (47,XXX) and 47,XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes,” then helped to get the book into libraries.
  • Collaborated with local and online support groups worldwide.
  • Established Facebook pages and support groups to provide ongoing support.
  • Provided personalized Helpline support for hundreds of families in crisis.
  • Conducted the 2015 Family Conference in Baltimore and the 2017 conference in Denver. Began planning the 2019 conference in Atlanta.
  • Launched the Professional Directory of intervention specialists throughout the world.
  • Organized ten, 90-minute webinars featuring leading specialists.
  • Began developing, in association with its AXYS Clinic & Research Consortium, professionally-written treatment guidelines.
National X & Y Chromosome Variation Awareness Month Map

Seventeen states have declared May as National X & Y Chromosome Variation Awareness Month.