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.
AXYS Family Conference 2017 Schedule
Saturday, June 24th
| 7:30-8:30 | 8:30-10:00 | 10:00-10:15 | 10:30-11:00 | 11:10-12:00 |
|---|---|---|---|---|
| Check in and registration
Room: Conference center lobby |
Welcoming remarks
Keynote Addresses: Sharon Close, PhD and Nicole Tartaglia, MD Room: Mount Oxford Auditorium |
Condition specific socialization activities
XXY: Mount Oxford Auditorium XYY: Princeton Room XXX: Harvard Room XXYY: Yale Room |
Topic: Understanding Language Development and Interventions
Variations: All Speaker: Jacqueline Frazier, MA, CCC-SLP Room: Princeton |
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| Topic: Independent Living Skills: Life After High School
Variations: All Speaker: Sharon Heller Room: Yale |
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| Topic: First Time Attendee Panel
Variations: All Speaker: Susan Howell, MS, MBA, CGC and others Room: Oxford |
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| Topic: What can animal research tell us about sex chromosome variations?
Variations: XXY, XYY Speaker: Arthur P. Arnold, PhD Room: Harvard |
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| Topic: Brief Research Presentations for Scientific Faculty (open to all)
Room: Columbia |
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!
Books
Thanks to the generosity of the book’s author, Virginia Isaac’s Cover, MSW, AXYS is pleased to make this book available to the X and Y variation community, in its entirety, at no cost. Please feel free to download and/or print it for your personal use. (Those wishing to purchase a soft-bound copy can do so at Amazon or Kindle. All proceeds from the sale of this book benefit AXYS.)
2017 AXYS Family Conference
AXYS Family Conference: Aurora, CO, June 24-25, 2017
AXYS invites you to join us at Children’s Hospital in Aurora, Colorado (near Denver), June 24-25 for our biennial family conference. We are bringing together many of the leading clinicians, researchers and other interventionists. Our goal is to inform you of the latest knowledge about x and y variations and to continue to build the x and y variation community of families and professionals. All family members are welcome!
TOPICS
- Behavior
- Communication
- Education: Early intervention through young adulthood
- Social/Emotional Development and Issues
- Adult Transitions including Employment and Independent Living
- Endocrine Management/Testosterone Treatments
- Urology/Fertility
- Gender Issues
- Seizures and/or Tremors
- Legal Advocacy including SSI/SSDI
- Research Updates/State of the Science
and more
CONFERENCE AGENDA
Click here to view a day-to-day agenda for the conference including the Adult Retreat Agenda. Please be aware that the agenda is preliminary and that talk titles, days and times are subject to change. Check back frequently for updates and additions.
For your convenience, you may also view and print an online schedule of conference events.
OTHER CONFERENCE ACTIVITIES
In addition to talks given by the above professionals, AXYS will be organizing a number of support group meetings, including those that are based on the genetic signatures 47,XXY, 47,XYY, 47,XXX, and 48,XXYY. Details will be provided in the conference agenda.
A room will be provided as a safe space for those adults ages 18 and up so they can talk about issues that are private and personal to their diagnosis. There will be speakers and the room will be available during the time that parents are attending the family conference and the space will not be open to parents.
THINGS TO DO IN DENVER
VISIT DENVER is a private, nonprofit trade association that is responsible for marketing metro Denver as a convention and leisure destination. The Bureau is contracted by the City & County of Denver to act as the official marketing agency for Denver.
SPEAKERS
While the conference faculty is still being added to, the following individuals have tentatively committed to sharing their knowledge and experience with you:
- Megan Allyse, PhD
- Arthur Arnold, PhD
- Elizabeth Berry-Kravis, MD, PhD
- Dorothy Boothe, PhD
- Nienke Bouw, MSc
- Sharron Close, PhD
- Elizabeth Coan, PsyD
- Virginia Cover, MSW
- Sara Davis, MA
- Shanlee Davis, MD
- Robert Dudley, PhD
- Jacqueline Frazier, M.A., CCC-SLP
- David Hong, MD
- Susan Howell, MS, MBA, CGC
- Jennifer Janusz, PsyD
- Sheryl Kelly, Esq.
- Kimberly Kuiper, MSc
- Akanksha Mehta, MD
- Cory Ellen Nourie, MSS, MLSP
- Armin Raznahan, MD, PhD
- Alan Reiss, MD
- Karen Riley, PhD
- Alan Rogol, MD
- B. Michelle Schweiger, DO, MPH
- Amy Talboy, MD
- Nicole Tartaglia, MD
- Erin Torres, NP
- Rebecca Wilson, PsyD
- Swaytha Yalamanchi, MD
and more
OFFICIAL AXYS CONFERENCE FACEBOOK PAGE
You’ll find latest news about the conference here.