Please note that you must register on Zoom for all sessions that you would like to attend. Just click/tap on the icon in the far right column to be taken to the Zoom registration page for that session. 

You may search/filter the contents by using the “Search” box in the top right corner of the agenda. This agenda is best viewed on a laptop, desktop, or tablet. Mobile users will have the best viewing experience while viewing the agenda with their phone sideways in landscape orientation. If your device has a small viewing area, you may scroll horizontally to view all of the agenda content.

Date

Start (US Eastern Time)

End (US Eastern Time)

Session Name

Session Description

Speaker(s) / Moderator(s)

Speaker / Moderator Photo

Handouts / Related Media

Relevant Condition(s)

Chat/Social Session

Session Will be Recorded

Zoom Registration

Saturday June 192:00 PM3:00 PMWelcome Session for First Time Conference Attendees and Newly DiagnosedIf this is your first AXYS conference or if you or your family member was diagnosed recently come to this session to get a preview of the conference and get to know a couple of our speakers. We're happy to answer your questions so you have an amazing conference experience.Erin Frith, MEd , Carol Meerschaert, Erin TorresErin Frith
Carol Meerschaert
Erin Torres
All
Zoom Registration
Monday June 213:00 PM3:30 PMOpening CelebrationJoin this session to meet the board and celebrate our first virtual conference.All AXYS board members & Carol MeerschaertCarol MeerschaertAll
Zoom Registration
Monday June 213:30 PM5:00 PMXXY Welcome Open House Drop in SessionDrop in to meet individuals with XXY and their families. Gary Glissman, Matt McKeon, Stefan SchwarzGary Glissman
Matt McKeon
Stefan Schwarz
About 47,XXYXXY
Zoom Registration
Monday June 213:30 PM5:00 PMXYY Welcome Open House Drop in SessionDrop in to meet individuals with XYY and their families.Judi Cyr, Silvia Mann, Heidi WallackSilvia Mann
Heidi Wallack
About 47,XYYXYY
Zoom Registration
Monday June 213:30 PM5:00 PMTrisomy X Welcome Open House Drop in SessionDrop in to meet individuals with Trisomy X and their families.Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Jessica Burke, Joanne Burke, Carrie Curtis, Erin Frith, MEd, Andrea MillettHannah Acevedo-Schiesel
Erin Frith
Andrea Millett
About Trisomy X |
YouTube video: An overview of Trisomy X
Trisomy X
Zoom Registration
Monday June 213:30 PM5:00 PMXXYY Welcome Open House Drop in SessionDrop in to say hi to the leaders of the XXYY Project.Gail Decker, John SlossGail DeckerAbout 48,XXYYXXYY
Zoom Registration
Monday June 213:30 PM5:00 PMXXXY and others Welcome Open House Drop in SessionJoin this session if your family member has XXXY or other 48 or 49 X/Y chromosome variations.Jennifer Chapdelaine, Charissa Moll, Nancy PereschukJennifer ChapdelaineAbout 48,XXXY and other variationsXXXY
Zoom Registration
Monday June 215:00 PM6:30 PMNew England Welcome SessionWe warmly invite those who live in CT, MA, ME, NH and VT to meet the support group leaders from this area and others who live near you.Andrea Millett, Bill MulkernAndrea MillettAXYS Support GroupsAll
Zoom Registration
Monday June 215:00 PM6:30 PMNY Tri State and Upstate NY Welcome SessionWe warmly invite those who live in NY state or the NYC Tri-State area to meet the support group leaders from this area and others who live near you.Anita Chambers, Carrie Riby, Avrin SlatkinCarrie RibyAXYS Support GroupsAll
Zoom Registration
Monday June 215:00 PM6:30 PMMid Atlantic (PA, NJ, DE, MD, DC, VA, WV) Welcome SessionWe warmly invite those who live in PA, NJ, MD, VA and DC to meet the support group leaders from this area and others who live near you.Erin Frith, MEd, Matt McKeon, Stefan Schwarz, Erin TorresErin Frith
Matt McKeon
Stefan Schwarz
Erin Torres
AXYS Support GroupsAll
Zoom Registration
Monday June 215:00 PM6:30 PMBienvenidos Hispano-hablantesInvitamos cordialmente a aquellos que hablan español a pasar por esta sesión de chat.Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Silvia Mann, Lorena QuirogaHannah Acevedo-Schiesel
Silvia Mann
AXYS Support GroupsAll
Zoom Registration
Monday June 215:00 PM6:30 PMSoutheastern (GA, FL, AL, MS, TN) US Welcome SessionWe warmly invite those who live in GA, FL, AL, MS, and TN to meet the support group leaders from this area and others who live near you.Dorothy Boothe, Tina HanifDorothy BootheAXYS Support GroupsAll
Zoom Registration
Monday June 216:00 PM7:30 PMMidwest Welcome SessionWe warmly invite those who live in KS, MO, NE, IA and other Mid-Western states to meet the support group leaders from this area and others who live near you.Rebecca Kaus, Kerry SloyanRebecca KausAXYS Support GroupsAll
Zoom Registration
Monday June 217:00 PM8:30 PMRocky Mountain Welcome SessionWe warmly invite those who live in CO, UT, NM, WY, and western NE to meet the support group leaders from this area and others who live near you.Susan Atwell, Gary Glissman, Susan Howell, MS, CGC, MBAGary Glissman
Susan Howell
AXYS Support GroupsAll
Zoom Registration
Monday June 218:00 PM9:30 PMWest Coast Welcome SessionWe warmly invite those who live in CA, OR and WA to meet the support group leaders from this area and others who live near you.Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Vanessa Alschuler, Lauren Mathews, Lorena QuirogaHannah Acevedo-Schiesel
Vanessa Alschuler
Lauren Mathews
AXYS Support GroupsAll
Zoom Registration
Tuesday June 222:30 PM2:45 PMFirst Time Attendee Check-in SessionStop by and say hello if this is your first conference or if you are new to AXYS. We're here to answer your questions and make you feel welcome. Erin Frith, MEd, Stefan Schwarz, Erin TorresErin Frith Stefan Schwarz
Erin Torres
All
Zoom Registration
Tuesday June 223:00 PM3:50 PMWhat is Testosterone? What is TRT?If you have heard a lot about “testosterone” but do not really know what it is or why it is such a big deal, this session is for you. We will discuss the systemic role of testosterone in the body, testosterone throughout the lifespan, and measurement of testosterone and other related hormones. This is the background you need to partner with your endocrinologist.

Shanlee Davis, MD, PhD, Assistant Professor of Pediatrics, University of ColoradoDr. Shanlee DavisXXY, XXYY, XXXY
Zoom Registration
Tuesday June 224:00 PM4:50 PMCan We Talk? Disclosing the diagnosis to siblings, relatives. A talk for parents of young children.How do you tell your relatives? When do you tell them or do you tell them at all? An open discussion on this important topic.Dr. Lilian CohenDr. Lilian CohenYouTube video: Disclosing the Diagnosis in X and Y VariationsAll
Zoom Registration
Tuesday June 225:00 PM5:50 PMConversation Skills for Adults: Lessons from the PEERS ProgramSocial skills challenges are common among individuals with various genetic, neurodevelopmental, and mental health conditions. Although these individuals may struggle with friendships and relationships, many indicate a desire for learning how to develop and maintain meaningful relationships with others. This presentation will discuss the UCLA PEERS Program, an evidence-based social skills intervention for youth and young adults with social skills difficulties, with a specific focus on concrete rules and steps for conversation skills.

Jasper A. Estabillo, PhD, Clinical Instructor & Postdoctoral Fellow, UCLA PEERS ClinicDr. Jasper EstabilloAll
Zoom Registration
Tuesday June 226:00 PM6:50 PMEarly Intervention for Young Children with X&Y VariationsRecent advances in noninvasive prenatal testing have resulted in an increased number of infants with confirmed diagnoses of X&Y variations. Consequently, early childhood support systems must prepare for an influx of children with known risks for associated developmental delays and potential future school problems. In a recent national survey, parents of children with X&Y variations described early intervention (EI) services as desirable and effective yet also difficult to obtain due to a lack of provider knowledge and challenges navigating the intervention systems. This presentation will provide an introduction to EI services in the U.S., current data on how young children with X&Y variations are served through EI, and tips for how families can access EI services for their young children.Talia Thompson, PhD, Assistant Professor, University of ColoradoDr. Talia ThompsonAXYS Consensus Document: Educational Guidelines, IEPs, and School ServicesAll
Zoom Registration
Tuesday June 227:30 PM8:00 PMCan We Talk? Chat with Erin and Jonathan from the NIH Study about upcoming research opportunitiesJonathan Blumenthal, Erin TorresJonathan Blumenthal
Erin Torres
YouTube video: Dr. Raznahan on NIMH research on X&Y chromosome variationsAll
Zoom Registration
Tuesday June 228:00 PM8:50 PMPatterns of Mental Health Risk in X/Y VariationsThis talk will summarize findings from new research that examined patterns of mental health difficulties in children, adolescents, and adults with XXY, XYY, XXX, and XXYY. Recommendations for clinical practice based on the results from this research will be discussed briefly. The talk is intended for caregivers/ parents of youth and adults with X/Y variations, as well as clinicians that work with these families.Srishti Rau, PhD, Pediatric Neuro-psychologist, Children's National and NIMHDr. Srishti RauAll
Zoom Registration
Tuesday June 229:15 PM9:30 PMMeditationDan Globus, the Director and lead Meditation teacher of Meditation House, will be leading two Mindfulness Meditation sessions at the AXYS 2021 Virtual Family Conference. Meditation House specializes in teaching corporate mindfulness programs. Dan’s meditations draw inspiration from his Tibetan Buddhist training and his life experiences. He teaches a secular style of Meditation that is appealing to all people no matter their religion, race, or country of origin. Beginners and experienced meditators alike will find this class calming, insightful, and inspiring.Dan GlobusDan GlobusMeditation House websiteAll
Zoom Registration
Wednesday June 232:30 PM2:45 PMFirst Time Attendee Check-in SessionStop by and say hello if this is your first conference or if you are new to AXYS. We're here to answer your questions and make you feel welcome.Erin Frith, MEd, Carol Meerschaert, Stefan SchwarzErin Frith
Carol Meerschaert
Stefan Schwarz
All
Zoom Registration
Wednesday June 233:00 PM3:50 PMWhole Genome Sequencing and Genetic Counseling for X & Y Variations: Research Opportunities at the NIHThis presentation will describe a genetic sequencing research study at the NIH. We will discuss the scientific reasoning for the study, relevant genetic technologies, and genetic counseling related to X&Y variations. This presentation is aimed toward parents, adults, and adolescents - anyone who is interested in learning more!Michael Setzer, ScM, CGC, Genetic Counselor, National Institutes of HealthMichael SetzerYouTube video: How Research Benefits Families and PatientsAll
Zoom Registration
Wednesday June 234:00 PM4:50 PMCan We Talk? Confabulation: When your child does not tell the truthLearn from seasoned parents who will share experiences and strategies. Panel of Parents: Liz Claus, Judi Cyr, Gail Decker, Heidi WallackGail Decker
Heidi Wallack
All
Zoom Registration
Wednesday June 235:00 PM5:50 PMCan We Talk? Chat about the K-12 School ExperienceErin Frith, MEd,
Educator, Talia Thompson, PhD, Assistant Professor, University of Colorado
Erin Frith
Dr. Talia Thompson
AXYS Consensus Document: Educational Guidelines, IEPs, and School ServicesAll
Zoom Registration
Wednesday June 236:00 PM6:50 PMLego BuildGrab your legos and have some family funKerry Sloyan and familyAll
Zoom Registration
Wednesday June 237:00 PM7:50 PMBlack Affinity GroupA time for all who identify as Black to gather and chat.Dalene Basden, Erin TorresDalene Basden
Erin Torres
All
Zoom Registration
Wednesday June 238:00 PM8:50 PMTools for Teaching Social Boundaries to Tweens, Teens, and Young AdultsSome behaviors can become problematic for individuals who struggle to understand and maintain social boundaries, particularly as they reach adolescence and young adulthood.
This workshop will help caregivers, parents, teachers, and therapists learn strategies for helping make unwritten social rules more clear and concrete.

Hannah Acevedo-Schiesel MS, LEP, ABSNP, BCBA, Educational Psychologist/ Diplomate in School Neuro-psychology/ Board Certified Behavior Analyst, Pathways to LearningHannah Acevedo-SchieselAll
Zoom Registration
Thursday June 242:30 PM2:45 PMFirst Time Attendee Check-in SessionStop by and say hello if this is your first conference or if you are new to AXYS. We're here to answer your questions and make you feel welcome. Erin Frith, MEd, Carol Meerschaert, Stefan Schwarz, Erin TorresErin Frith
Carol Meerschaert
Stefan Schwarz
Erin Torres
All
Zoom Registration
Thursday June 243:00 PM3:50 PM"It gets worse and then it gets better:" Individuals’ Experiences Receiving and Adapting to a Sex Chromosome Aneuploidy DiagnosisIn this presentation, we will give an overview of the experiences of adolescents and adults who received a postnatal diagnosis of a sex chromosome aneuploidy. Using data from interviews and surveys, we will describe individuals’ experiences receiving and adapting to their diagnosis over time. We will also discuss the role of self-advocacy and suggestions individuals provided for how the diagnosis disclosure process can be improved. This presentation may be interesting to a variety of audiences including people with an X/Y variation, their family members, and allies hoping to better understand their experiences.Nivi Ahlawat, BS, Masters Student in Human Genetics and Genetic Counseling, Stanford School of Medicine

Jordan P. Richardson, BS, Post-Baccalaureate Research Trainee, Biomedical Ethics Research Program, Mayo Clinic
Nivi Ahlawat
Jordan P. Richardson
YouTube video: Parental Advocacy for Children with Sex Chromosome AneuploidiesAll
Zoom Registration
Thursday June 244:00 PM4:50 PMRecommendations to Providers to Improve the Parent Experience of Receiving an X/Y Variation DiagnosisWe are interested in publishing concrete advise to medical providers on how to best deliver a diagnosis of an X/Y Variation. We will present feedback from the hundreds of parents who have participated in our research thus far and ask for feedback from you on whether they reflect your experiences and anything else you would like medical providers to know.Kirsten A. Riggan, MA, MS, Research Coordinator, Mayo ClinicKirsten A. RigganHow to Best Deliver a Diagnosis of an X/Y Variation to ParentsAll
Zoom Registration
Thursday June 245:00 PM5:50 PMEmotional RegulationThis presentation will help caregivers /parents of adolescents with Klinefelter's syndrome understand emotional regulation. Participants will learn about the typical emotional responses in adolescents and how having Klinefelter's syndrome plays a unique role. Strategies for parental coping will be provided and discussed.Leela Morrow, PsyD, Pediatric Psychologist, Children's Hospital of PhiladelphiaDr. Leela MorrowYouTube video: Keeping your cool around emotional behaviorsAll
Zoom Registration
Thursday June 246:00 PM6:50 PMTransition from pediatric to adult-oriented medical careTransition from pediatric to adult-oriented care is important for health and wellbeing. However, adolescents and young adults have unique needs and the transition process can be full of challenges. This talk will describe key steps in transition for adolescents/ young adults, parents/caregivers and healthcare professionals. We will review resources, tools and models of care to help patients navigate the passage to adult-oriented care. At the end of this presentation, participants will be able to: 1) appreciate the importance of transition; 2) recognize available resources; and 3) begin discussions with healthcare providers to plan a smooth transition.Andrew Dwyer, PhD, FNP-BC, FNAP, FAAN
Assistant Professor
Boston College - MGH-Harvard Center for Reproductive Medicine
Dr. Andrew DwyerPediatric vs. Adult Care | A Family Toolkit: Pediatric to Adult Health Care TransitionAll
Zoom Registration
Thursday June 247:00 PM7:50 PMScavenger HuntA fun activity for all ages.Andrea MillettAndrea MillettAll
Zoom Registration