2019 AXYS Family Conference

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Reflecting on the 2019 AXYS Family Conference 

We promised that our 2019 AXYS Family Conference would be the best one yet and we achieved that goal. Nearly 400 participants from as far away as Brazil and The Netherlands gained knowledge and understanding in Atlanta. You could feel the strong sense of community and watch friendships blossom. Here are some comments from those who attended in their own words:  

“The people my daughter and I met were amazing.” 

“A real sense of community was present at this conference.” 

“The camaraderie with other parents was invaluable. Seeing our son mingle with the other guys so comfortably. The bowling, pool, and billiards were a hit!”

“This conference has changed our lives, and in return our son’s…AXYS is a family I am proud to have, my admiration of the doctors is off the charts!!!”

“I had a WONDERFUL experience at the conference. I learned so much, and my cup is full of knowledge that I am excited to share. I’m already looking forward to the next conference. Thank you to all the people in the background who got things together. I know it’s a job. Thank you so much.” 

From an exhibitor: “I wanted to thank you for producing a flawless event where researchers and clinicians could share our findings with the families and other professionals. The event felt very well organized and we felt very well taken care of in terms of food and drink, along with comfortable places to talk with families and among ourselves.  Both formal and impromptu discussions about our research with families who have participated in the past, are about to participate in the near future, or are now considering participating thanks to these opportunities, were truly the highlight of the conference.”

AXYS offered live webcasting for the first time. From as far away as Cyprus, 35 families were able to participate from their homes, watching sessions as they happened and submitting questions for the speakers. These sessions were recorded and are available on our YouTube channel

To share knowledge with those who could not join us and to serve as a review for those in attendance the slide decks and the posters are available on our website. We also have slide decks and recordings from past conferences that remain relevant and offer practical knowledge. Visit /about/conference-mtrls/.

Everyone at AXYS offers deep gratitude to all who learned from our amazing speakers, enjoyed bowling in Wisteria Lanes, gained new friends, participated in group and family portraits, met researchers, and joined support groups. Over 90% reported the conference met or exceeded their expectations and over 80% said they learned what they were hoping to learn. 

Numerous aspects of this event were taken from the suggestions offered after the 2017 conference including: lunch choices, conference t-shirts, having a place for teens and adults to hang out and play cards or board games, having a session with awareness advocates, special ‘retreat’ sessions for parents of infants and toddlers and another retreat on transitioning to adulthood. Most session topics came from our community including: special education, testosterone replacement, fertility, siblings and mental health.  Our thanks to all who offered more great suggestions that we will use to plan the next conference.

More from attendees in their own words: 

My son is not alone… I am not alone and most of all, it was NOT MY FAULT! I have felt so guilty about my son being diagnosed with xxy and always thought I had done something to cause this!” 

“I had a chance to speak with families/caretakers of other XXYY guys and realized that so many of them are going through the same things that our family is going through. It’s nice to know that you are not alone.” 

“I got so much out of the interaction with other KS men and their family members. I shared a lot with them and learned a lot from them”

“Networking was huge. Also great for my young adult son to meet others and meet some great role models.”

“The most valuable part of the conference for me was meeting and interacting with the other Trisomy X families, especially the teens. I loved them all.” 

“Our first conference… day one…what we have learned and the amazing people we have met…there are just no words to express the love and respect 😊…in just one day, we have gained more information, and had things explained to us by the EXPERTS in AXYS that our doctors couldn’t in 11 years!!…And on top of the brilliant minds….each and every Doctor and the entire AXYS family was more caring than the next!!!!!…the information we received today will take us days to digest …lol ….we have learned things today….that our own doctors are misinformed about!!!…This conference will make a difference not just in my sons life ….but in every one of his doctors lives from this day forward ….THANK YOU”

“Not enough words to describe the feeling of satisfaction, friendships formed, knowledge gained, great speakers, good food, amazing Emory Conference Center, and so much more… Thank you Gary GlissmanCarol Meerschaert, and everyone from AXYS and elsewhere who worked so hard to make this Conference such a success! Grateful, hopeful, optimistic and ready to fight harder through this journey. Stronger together as we move forward to break barriers for X and Y Variations!”

(Photos by Stuart Hasson Studios)

2019-08-03T12:52:41-04:00Categories: All Variations|Tags: |

2019 AXYS Family Conference, Atlanta, Georgia

2019 AXYS Family Conference Videos

Conference sessions recorded during the webcast on June 29th and 30th.

Presenter

Presentation

Relevant Variation

Allan Reiss, MDA Roadmap for Advancing Knowledge and Clinical Practice of Brain & Behavioral Effects of X and Y Chromosome VariationAll
Allan Reiss, MD and Vanessa Alschuler, BABrains, Genes, And Puberty: Testosterone Replacement Therapy in Klinefelter Syndrome47,XXY (KS)
Armin Raznahan, MD, PhDThe NIMH Study on X & Y Chromosome Variations - Goals, Study Design, Key Findings & Future PlansAll
B. Michelle Schweiger, DO, MPHMetabolic Syndrome in 47,XXY47,XXY (KS)
Carol Meerschaert, AXYS EDWelcome to the 2019 AXYS Family ConferenceAll
David Marcus, PhDThe Neuropsychological Evaluation and What It Can Tell ParentsAll
Erin Torres, MSN, CRNP and Srishti Rau, PhDPsychiatric and Neurodevelopmental Comorbidities in XXY47,XXY (KS)
Nicole Tartaglia, MDeXtraordinarY Kids Research in ColoradoAll
Rebecca Wilson, PsyDHow Research Can Benefit Families and PatientsAll
Rebecca Wilson, PsyDSocial Skill Challenges, Toddlers to TeensAll
Shanlee Davis, MDClinical Trials in X and Y Variations: Doing Research that MattersAll
Sharron Close, PhD, MS, CPNP-PC, FAANRoadmap to ResearchAll
Sophie van Rijn, PhDResearch Aims: TRIXY National Center of Expertise47,XXY (KS) | 47,XYY | 47,XXX

2019 AXYS Family Conference Session Presentation Slides

Presentation Slides are in PDF Format

Presenter

Presentation

Relevant Variation

Allan Reiss, MDA Roadmap for Advancing Knowledge and Clinical Practice of Brain & Behavioral Effects of X and Y Chromosome VariationAll
Allan Reiss, MD and Vanessa Alschuler, BABrains, Genes, And Puberty: Testosterone Replacement Therapy in Klinefelter Syndrome47,XXY (KS)
B. Michelle Schweiger, DO, MPHMetabolic Syndrome in 47,XXY47,XXY (KS)
David Hong, MDUse of Psychiatric Medications for Serious Mental Health ChallengesAll
David Marcus, PhDThe Neuropsychological Evaluation and What It Can Tell ParentsAll
Dorothy Boothe, PhDTransition to Work and Higher EducationAll
Erin Frith, MEd and Talia Thompson, PhDNavigating the IEP Process and BeyondAll
Erin Torres, MSN, CRNP-PMH and Srishti Rau, PHDPsychiatric and Neurodevelopmental Comorbidities in XXY47,XXY (KS)
Hannah Acevedo, LEP, ABSNP, BCBAPositive Behavior Supports for Home and SchoolAll
Leen Wehbeh, MDMedical Management of Klinefelter Syndrome XXY in Adults47,XXY (KS)
Maria Vogiatzi, MDIndependent Living Skills for Individuals with X and Y Chromosome VariationsAll
Nicole Tartaglia, MDeXtraordinarY Kids Research in ColoradoAll
Paul Dressler, MD, MPHTransitioning from Pediatric to Adult HealthcareAll
Rebecca Wilson, PsyDHow Research Can Benefit Families and PatientsAll
Shanlee Davis, MD, MSHormones in XXY, XXYY, and XXXY47,XXY (KS) | 48,XXYY | 48,XXXY
Sharron Close, PhD, MS, CPNP-PC, FAANRoadmap to ResearchAll
Sophie van Rijn, PhDCognitive and behavioral development of young children with 47,XXY, 47,XXX, and 47,XYY aged 1 to 6 years: first results of the TRIXY study47,XXY (KS) | 47,XXX | 47,XYY
Sophie van Rijn, PhDResearch aims - TRIXY National Center of Expertise47,XXY (KS) | 47,XXX | 47,XYY
Sophie van Rijn, PhDCognitive and behavioral development of children with 47,XXX: first results of the TRIXY study47,XXX
Susan Brasher, PhD, CPNP, RNWorkshop for Brothers and Sisters of those with an X or Y VariationAll
Virginia Cover, MSW, MBATransition to Work, Independence, & AdulthoodAll

2019 AXYS Family Conference Poster Presentations

Posters are in PDF Format

Poster

Relevant Variation

Association of Motor Skills with Adaptive Functioning in Children with 47,XXY Klinefelter and XXYY Syndrome47,XXY (KS) | 48,XXYY
Characterizing the Anxiety Phenotype in Trisomy X47,XXX
Developing a Model for the Transition from Pediatric to Adult CareAll
Early Therapies, School Supports, and Educational Outcomes for Students with Sex Chromosome VariationsAll
Executive Functioning of Children and Young Adults with an Additional X Chromosome47,XXY (KS) | 47,XXX
Exploration of Health Concerns and Needs for Care in Women with Trisomy X (47,XXX)47,XXX
Family Experiences and Attitudes About Receiving the Diagnosis of X & Y Chromosome Variations - Preliminary ResultsAll
Living with XXYY - Voices of Patients and Caregivers48,XXYY
NIMH Intramural Research Program Study of X- and Y-Chromosome VariationsAll
Relationship of Physical Function and Psychosocial Health on Quality of Life in Individuals with 48,XXYY - Preliminary Results48,XXYY
2019-07-19T11:49:21-04:00Tags: |

2019 AXYS Family Conference

2019 AXYS Family Conference

2019 AXYS Family Conference | Atlanta, Georgia | June 28-30

Emory Conference Center Hotel
1615 Clifton Road NE Atlanta, GA 30329

This will be our best conference yet. Top researchers and clinicians will share the latest knowledge so you gain a greater understanding of X and Y conditions and take home practical information about the conditions and how they affect all ages. No matter which condition exists in your family, we have the information you seek.

This amazing conference includes:

  • Informative sessions with researchers, clinicians, experts and advocates. Check out the full agenda. Check back often as we add speakers and topics.
  • Social time to meet other families and get to know them. Often the most impactful conversations and connections happen at the pool or during a meal.
  • A warm, welcoming facility with indoor and outdoor spaces for both large gatherings and small quiet conversations.
  • A space for teens and adults with conditions that includes a bowling alley, pool tables and games.
  • Two days of sessions, conference materials and a delicious buffet lunch Saturday and Sunday.

New this year:

  • Be rewarded with FREE conference registration, hotel accommodations or both when reaching the reward level you choose in our new Road to Atlanta “rewards” program. If you are participating in the program and achieve your goal, AXYS will handle your registration and hotel room so no need to register or book your room beforehand. Sign up and start fundraising today. (The Road to Atlanta fundraiser deadline is May 31.)
  • Conference t-shirts. Don’t forget to pre-order during registration, as shirts will not be available for purchase at the conference.

Conference pricing:

Adult$325
Adult/Teen with Condition$225
Child (under 18)$225
Student/Poster Presenter
(Graduate students and trainees in related field of study)
$225
Conference Hotel RoomsFor current pricing, please contact Emory Conference Center Hotel at:
1-800-933-6679

About registration

Registration is a two-step process. In the first step, you will provide AXYS with important information for the conference such as the information that will appear on your conference badge and your childcare needs, if any. Upon completion of this step, you will be redirected to a page where you will select your ticket type and quantity, then enter your payment information.

Please be aware that if you do not complete the entire process before closing or navigating away from any of the registration pages, you will not be able to resume where you left off and will have to enter all information again.

2020-03-04T13:11:42-05:00Tags: |