Issues and Challenges in XYY Syndrome
Presentation slides from the 2017 AXYS Family Conference presentation:
Issues and Challenges in XYY Syndrome (PDF)
Presented by Erin Torres, Nurse Practitioner
Trisomy X Panel and Q&A
Presentation slides from the 2017 AXYS Family Conference presentation:
Triple X Syndrome (PDF)
Presented by Rebecca Wilson, PsyD and others
Understanding Executive Functions
Presentation slides from the 2017 AXYS Family Conference presentation:
Understanding Executive Functions (PDF)
Presented by Jennifer A. Janusz, Psy.D., ABPP-Cn
IEP and 504 Accommodations
Presentation slides from the 2017 AXYS Family Conference presentation:
IEP and 504 Accommodations (PDF)
Presented by Karen Riley, PhD
Thinking About Starting Testosterone for XXY/XXYY/XXXY
Presentation slides from the 2017 AXYS Family Conference presentation:
Thinking About Starting Testosterone for XXY/XXYY/XXXY (PDF)
Presented by Shanlee Davis, MD, MSCS
Guide to Trisomy X
Article Title: Guide to Trisomy X
Author: Kathleen Erskine
Date of Publication: 2011
Kathleen Erskine, a graduate student in the Joan H. Marks Graduate Program in Human Genetics at Sarah Lawrence College conducted a study to identify the important aspects of 47, XXX/ 3X/ Triple X/ Trisomy X to discuss with girls when they first learn about their Trisomy X diagnosis. The end result of this study is this educational booklet for parents to give their daughter when they first tell her about Trisomy X.
Professional Directory
Professional Directory
One of the most common questions to the AXYS Help Line is to request health care provider recommendations by geographical region. AXYS has promoted development of the Clinic and Research Consortium but also recognizes the need to maintain a listing of local providers for the X and Y Variation community. The directory is built by those who submit the name and contact information of providers who have shown interest and competence in gaining clinical expertise in X and Y variations. Providers submitted to the Professional Directory must be licensed in their state in their particular area of practice. AXYS cannot vet providers and cannot specifically recommend these professionals.
Please also be sure to always check the AXYS Clinic & Research Consortium (ACRC) page to see if there is a clinic within a reasonable distance of you.
Please inform AXYS via info@genetic.org if you become aware of any changes to the provider’s service.
Disclaimer: AXYS maintains a directory of healthcare providers and education advocates as a service to the X and Y Variation Community. These names are provided by members of the community. AXYS makes no representations or warranties regarding their clinical competencies or specialized knowledge regarding sex chromosome aneuploidy. AXYS reserves the right to edit the submitter’s comments.
Facial Recognition Study Details
One way to determine if each different type of sex chromosome variation has distinctly recognizable facial features is by using sophisticated facial recognition software. This distinction could, in time, lead to an earlier diagnosis.
Parents would be asked to submit electronic facial images of their children (affected children at different ages) and share their chromosome findings but no other protected health information. We would try to define the facial features for each type of sex chromosome variation and study the facial features over different ages, through a private online portal that could be made available to the support group.
This online portal includes an informed consent section, and directions for patients or their families to submit photographs. Affected boys and girls with extra sex chromosomes would be the primary study group. All submitted photos will be then transferred to the Face2Gene account of the geneticists or clinicians working with AXYS or the principal investigator for this study. Once sufficient numbers of photos have been submitted, FDNA would run an analysis on the different groups of photos to determine whether there are distinct gestalts and how these gestalts change over time. AXYS could share the portal’s online address and access code with your members, through the website, newsletter, social media, etc. We have set up such a portal for you to experiment with:
Access code: cucumber
Families need to “sign” that they have read and understood the content of this page. If families do not wish to state their real names or email, they are also free to do so.
Fundraising Ideas
Thank You
Thank you for your continued support in looking for new ways to help support the crucial work that AXYS provides to our members and their families. Your generosity helps fuel our passion to raise awareness, support and advocate on the behalf of the children and adults with X & Y chromosome variations.
Ways to Fundraise for AXYS
AXYS is a non-profit organization that relies on donations by members to fund its outreach. Please help support our efforts by holding a fundraiser. Below are a number of popular ideas for fundraisers. Want more information on a particular fundraising idea? Email us at info@genetic.org.
Fundraise for AXYS in 3 easy steps:
- Plan your event
- Hold your event
- Submit your donation form → AXYS Mail in Donation Form | XXYY Mail in Donation Form
• Golf Tournaments
• Bowl-A-Thons
• Wine & Cheese Parties
• Jewelry Parties
• Thirty-One Parties
• Pampered Chef Parties
• Bag Bingos
• Silent Auctions
• Live Auctions
• Texas Hold’em Tournaments
• Spaghetti Dinners
• Restaurant Fundraisers
• Facebook Fundraisers
• Dress Down Days
• Family Fun Days
• Barbecues
• Charity Runs/Walks
• Donations (in lieu of birthday presents)
• Recycling
• Garage Sales
• Bake Sales
• Pretzel Sales at sports games
• Gatorade & Water Sales at sports games
• Candy Sales at work
• Lemonade Stands
• Pledgling on Evite
Shop to Give
AXYS on CafePress
We have tees, hats, bags and more. 100% of the net proceeds will go directly to AXYS!