AXYS 2021 Virtual Family Conference Session RegistrationRick Frith2021-06-10T13:33:23-04:00
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Welcome Session for First Time Conference Attendees and Newly Diagnosed
If 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 Torres
Monday June 21
Join this session to meet the board and celebrate our first virtual conference.
All AXYS board members & Carol Meerschaert
Monday June 21
XXY Welcome Open House Drop in Session
Drop in to meet individuals with XXY and their families.
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 Colorado
XXY, XXYY, XXXY
Tuesday June 22
Can 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.
Conversation Skills for Adults: Lessons from the PEERS Program
Social 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.
Early Intervention for Young Children with X&Y Variations
Recent 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 Colorado
This 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 NIMH
Tuesday June 22
Dan 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.
Whole Genome Sequencing and Genetic Counseling for X & Y Variations: Research Opportunities at the NIH
This 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 Health
A time for all who identify as Black to gather and chat.
Dalene Basden, Erin Torres
Wednesday June 23
Tools for Teaching Social Boundaries to Tweens, Teens, and Young Adults
Some 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.
"It gets worse and then it gets better:" Individuals’ Experiences Receiving and Adapting to a Sex Chromosome Aneuploidy Diagnosis
In 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
Recommendations to Providers to Improve the Parent Experience of Receiving an X/Y Variation Diagnosis
We 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 Clinic
This 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 Philadelphia
Transition from pediatric to adult-oriented medical care
Transition 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.