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Date

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Session Name

Session Description

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Relevant Condition(s)

Chat/Social Session

Session Will be Recorded

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, Carol Meerschaert, Erin TorresAll
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 MeerschaertAll
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 SchwarzXXY
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 WallackXYY
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, Carrie Curtis, Erin Frith, Andrea MillettTrisomy X
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 SlossXXYY
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 PereschukXXXY
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 Mulkern, Martha PepekAll
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 RibyAll
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, Matt McKeon, Stefan Schwarz, Erin TorresAll
Monday June 215:00 PM6:30 PMBienvenidos Hispano-hablantesHannah Acevedo-Schiesel, Silvia Mann, Lorena QuirogaAll
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 HanifAll
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 SloyanAll
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 HowellAll
Monday June 218:00 PM9:30 PMWest Coast Welcome SessionHannah Acevedo, Vanessa Alschuler, Lauren Matthews, Lorena QuirogaAll
Tuesday June 222:30 PM2:45 PMFirst Time Attendee Check-in SessionErin Frith, Stefan Schwarz, Erin TorresAll
Tuesday June 223:00 PM3:50 PMWhat is Testosterone? What is TRT?Shanlee Davis, MD, MSXXY, XXYY, XXXY
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 CohenAll
Tuesday June 225:00 PM5:50 PMConversation Skills for Adults: Lessons from the PEERS ProgramJasper A. Estabillo, PhD, Clinical Instructor & Postdoctoral Fellow, UCLA PEERS ClinicAll
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, Researcher, eXtraordinarY Kids Clinic, University of Colorado School of MedicineAll
Tuesday June 227:30 PM8:00 PMCan We Talk? Chat with Erin and Jonathan from the NIH Study about upcoming research opportunitiesJonathan Blumenthal, Erin TorresAll
Tuesday June 228:00 PM8:50 PMPatterns of Mental Health Risk in X/Y VariationsSrishti Rau, PhD, Pediatric Neuropsychologist, Children's National and NIMHAll
Tuesday June 229:15 PM9:30 PMMeditationDan GlobusAll
Wednesday June 232:30 PM2:45 PMFirst Time Attendee Check-in SessionErin Frith, Carol Meerschaert, Stefan SchwarzAll
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 HealthAll
Wednesday June 234:00 PM4:50 PMCan We Talk? Confabulation: When your child does not tell the truthPanel of Parents: Liz Claus, Judi Cyr, Gail Decker, Heidi WallackAll
Wednesday June 235:00 PM5:50 PMNavigating the IEP Process and BeyondAn overview for newcomers to testing, accommodations and the IEP/504 process.Erin Frith, MEd,
Educator, Talia Thompson, PhD, Researcher, eXtraordinarY Kids Clinic, University of Colorado School of Medicine
AXYS Consensus Document: Educational Guidelines, IEPs, and School ServicesAll
Wednesday June 236:00 PM6:50 PMLego BuildKerry Sloyan and familyAll
Wednesday June 237:00 PM7:50 PMBlack Affinity GroupWe invite all who identify as black to join us.Dalene Basden, Erin TorresAll
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 Neuropsychology/Board Certified Behavior Analyst, Pathways to LearningAll
Thursday June 242:30 PM2:45 PMFirst Time Attendee Check-in SessionErin Frith, Carol Meerschaert, Stefan Schwarz, Erin TorresAll
Thursday June 243:00 PM3:50 PMTBA
Thursday June 244:00 PM4:50 PMTBA
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, MD, Pediatric Psychologist, Children's Hospital of PhiladelphiaAll
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
All
Thursday June 247:00 PM7:50 PMScavenger HuntAndrea MillettAll
Thursday June 248:00 PM8:50 PMSelf-care and ResiliencyPeople that care for others often have limited knowledge of the impact of compassion fatigue and lack skills needed to foster self-care practices for themselves. This presentation is designed to explore the concept of compassion fatigue and equip individuals with the knowledge and skill needed to identify caring and compassion fatigue, and create prevention and intervention plans to promote self-care and resiliency.

Topics will include:
  • What is compassion fatigue (CF)?

  • What are the causes of CF?

  • How do you create a plan for self-care that builds resiliency?
Donna M. White RN, PhD, CNS, LADC I, Addiction SpecialistAll
Thursday June 249:15 PM9:30 PMMeditationDan GlobusAll
Friday June 252:30 PM2:45 PMFirst Time Attendee Check-in SessionErin Frith, Carol Meerschaert, Stefan Schwarz, Erin TorresAll
Friday June 253:00 PM3:50 PMHeart Health in People with Klinefelter SyndromeWe will present concerns related to heart health that can be seen in some people with Klinefelter syndrome. We will also discuss ways to prevent, screen for, and treat any heart-related problems that may occur. This talk is intended for patients and their family members.Frances High, MD, PhD, Medical Geneticist, Massachusetts General HospitalXXY
Friday June 254:00 PM4:50 PMTBA
Friday June 255:00 PM5:50 PMFertility in Klinefelter SyndromePeter Schlegel, MD, Professor of Urology, Weill Cornell MedicineAXYS Consensus Document: Fertility Guidelines for KSXXY
Friday June 256:00 PM6:50 PMCan We Talk? Many ways to make a family: Donor conception, adoption and moreDrs. Ryan Flannigan, Stuart Howards, Hooman SadriAXYS Consensus Document: Fertility Guidelines for KSAll
Friday June 256:00 PM6:50 PMFertility in Trisomy XShanlee Davis, MD, MSArticle: Diminished Ovarian Reserve in Girls and Adolescents with TXSTrisomy X
Friday June 257:00 PM8:00 PMPerformanceMichael PalumboAll
Saturday June 268:00 AM8:50 AMCan We Talk? Coffee with the AXYS Board ChairErin FrithAll
Saturday June 269:15 AM9:45 AMIntroduction to the new Clinical Registry, GALAXY (Generating Advancements through Longitudinal Analysis in X and Y syndromes)This presentation will introduce and describe the new clinical registry, GALAXY (Generating Advancements through Longitudinal Analysis in X and Y syndromes). This AXYS funded registry aims to advance clinical research by collaborating in the collection of research data among national AXYS Clinic and Research Consortium (ACRC) members, utilizing standardized metrics, scientific approaches, and professional working groups to expedite progress in basic science, clinical management, and future treatments for X&Y syndromes.Shanlee Davis, MD, MS, & Susan Howell, MS, CGC, MBA, Genetic Counselor, University of ColoradoDesign the GALAXY Registry Logo ContestAll
Saturday June 2610:00 AM10:50 AMTestosterone treatment in Klinefelter syndromeKlinefelter Syndrome (KS) is associated with hypergonadotropic hypogonadism and treatment with testosterone replacement therapy (TRT) is commonly indicated. There are no international guideline for the most appropriate TRT in KS.
We conducted a retrospective study covering 5 years from 2015-2020. Data on TRT, biochemical parameters, bone mineral density (BMD), medications, comorbidity and karyotyping were extrated. We examined the effect of transdermal and injection TRT in 147 KS males. Testosterone levels were similar in the two TRT groups (p=0.9), while LH and FSH levels were higher in the group receiving transdermal TRT. Levels of all other parameters were similar. TRT, irrespective of route of administration, affects androgen responsive variables similarly in males with KS. Implementation of shared decision-making with patients may be important when choosing TRT.
Claus H. Gravholt, MD, PhD, Professor, Aarhus University HospitalArticle: Klinefelter Syndrome: Integrating Genetics, Neuropsychology, and EndocrinologyXXY
Saturday June 2611:00 AM11:50 AMCan We Talk? Starting TRT. A session for 'tweens to teens and their caregiversDr. Alan Rogol and Dr. Maria VogiatziXXY, XXYY, XXXY
Saturday June 2611:00 AM11:50 AMCan We Talk? TRT: A peer session on the practical considerations from those who are on TRTStefan Schwarz, TBAXXY, XXYY, XXXY
Saturday June 2611:00 AM11:50 AMCan We Talk? TRT and fertilityDr. Hooman SadriAXYS Consensus Document: Fertility Guidelines for KSXXY, XXYY, XXXY
Saturday June 2612:00 PMTBAChildren's activity: ArtAll
Saturday June 2612:00 PM1:50 PMResearch for Infants and Young Children: TRIXY Study, eXtraordinarY Babies, Infant Testosterone studiesOverviews and updates on the studies mentioned in the title of this session followed by answers to the question "What does this research mean to parents of young children?"Drs. Shanlee Davis, Sophie van Rijn, Nicole Tartaglia, and researchersAll
Saturday June 262:00 PM2:50 PMSpecial Education 101Tom Davis, Esq., Associate Attorney, Raffaele & Associates, LLC, & Ahmer Sheriff, JD, Attorney, Roetzel & Andress
All
Saturday June 263:00 PM3:50 PMCan We Talk? Disclosing your diagnosis at workShould you tell your boss or your colleagues about your X or Y variation? Adults with X and Y variations will lead this discussion.Matt McKeon, Andrea Millett, Stefan SchwarzAll
Saturday June 263:00 PM3:50 PMCan We Talk? Chat time for aunts, uncles, cousins, friends, grandparents. And all who care for those with an X or Y variation.A safe space to get questions answered and get together with those who love someone with an X or Y variation but are not the primary caregivers. Welcome aunts, uncles, cousins, friends, grandparents.Carol MeerschaertAll
Saturday June 264:30 PM4:50 PMCan We Talk? Chat with Erin and Jonathan from the NIH Study about the upcoming Trisomy X research studyJonathan Blumenthal, Erin TorresTrisomy X
Saturday June 265:00 PM5:50 PMPrenatal testing for X&Y Variations: What are the tests and what do they mean?With the development of cell-free DNA testing, we now have the ability to screen for variations in the X and Y chromosome prenatally in a non-invasive manner. This talk will review what these conditions are, how to test for them and any next steps to expect going forward.Rama Kastury, DO, Assistant Professor, Yale UniversityAll
Saturday June 266:00 PM6:50 PMCan We Talk? TRT: for West CoastDr. Ryan FlanniganXXY, XXYY, XXXY
Saturday June 267:00 PM7:50 PMCan We Talk? Parents of ToddlersErin Frith, Larry RakowskiAll
Saturday June 268:00 PM9:00 PMFireside chat: A chance to chat with AXYS board members and process all we've learned so far.Erin FrithAll
Sunday June 279:00 AM9:15 AMFirst Time Attendee Check-in SessionErin Frith, Carol Meerschaert, Stefan Schwarz, Erin TorresAll
Sunday June 2710:00 AM10:50 AMCan We Talk? My sibling has an extra X or Y (or more than one)TBAAll
Sunday June 2711:00 AM11:50 AMCan We Talk? XYY in the Teen YearsErin TorresXYY
Sunday June 2712:00 PM12:50 PMLatest findings and future plans from the NIMH study of X- and Y-chromosome variationsThis talk with update the AXYS community on latest findings from the NIMH study of X&Y chromosome variations. I will pay special attention to our work on mental health outcomes, and how these relate to individual and family wellbeing. The information presented will be relevant for all X/Y variation groups. I will also share news on upcoming studies from our group - including both online research and in-person studies at the NIH Clinical Center in Bethesda, MD.Armin Raznahan, MD, PhD, Chief, Section on Developmental Neurogenomics, NIMH, National Institutes of HealthAll
Sunday June 271:00 PM1:50 PMCoping with Anxiety DisorderThis session will focus on one of the most common behavioral conditions in children -- anxiety. Attendees will learn what the various manifestations of anxiety may look like across young children to adolescents. Various therapies and medications will also be reviewed. Topics will be specifically discussed through the lens of X&Y variation.David Hong, MD
Assistant Professor of Psychiatry and Behavioral Sciences, Stanford University School of Medicine
All
Sunday June 272:00 PM2:50 PMLGBTQ+ Affinity GroupWe invite all who identify as LGBTQ+ to join us.Erin FrithAll
Sunday June 272:00 PM2:50 PMBlack Affinity GroupWe invite all who identify as black to join us.Dalene Basden, Erin TorresAll
Sunday June 273:00 PM3:50 PMReprise: Adults with XXYDavid Davis, Zell Lundberg, Dave Wright, MTSYouTube video from 2009 conference: Adults' Perspective on 47,XXYXXY
Sunday June 273:00 PM3:50 PMAdults with Trisomy XSarah is High School student who did a study on Trisomy X and will share her findings.Sarah Lebish, Andrea MillettTrisomy X
Sunday June 273:00 PM3:50 PMXXYY Open HouseGail DeckerXXYY
Sunday June 274:00 PM4:50 PMDepression: Diagnosis and Treatment in Persons with X/Y VariationDepression can and does occur in some persons with X/Y variation though risk may be higher for some groups relative to others. In this presentation I will discuss the criteria for a diagnosis of depression, the contribution of genetic, hormonal and environmental factors to risk, and current medication and psychotherapy approaches to treatment. I will also discuss the potential for making treatments more "personalized" for persons with X/Y variation in the future through precision medicine approaches.Allan Reiss, MD, Stanford University School of Medicine, Professor of Psychiatry, Radiology and Pediatrics"BGAP Study Flyer | Article: Sex differences in psychiatric disorders: what we can learn from sex chromosome aneuploidiesAll
Sunday June 275:00 PM6:00 PMFireside Chat/SendoffA wrap up party to celebrate our community.Carol MeerschaertAll