2022 Theme: #InclusionMeans...
The Up of Down: An Insight Into The World Of Down Syndrome
A project of Alexander's Angels, Inc
The Up of Down 2022: Conference on the Progress of Down Syndrome Research.
Jointly Provided by NYU Long Island School of Medicine and Alexander’s Angels, Inc.
Jamie Edgin, PhD
Director, Cognition and Neural System Program
Director, Memory Development and Disorders Lab
Department of Psychology
University of Arizona
Role of Sleep for Cognitive Development in Down Syndrome
Dr. Edgin will review the current state of our understanding of sleep problems and their related cognitive and behavioral deficits in Down syndrome.
Peng Jiang, PhD
Department of Cell Biology and Neuroscience
Rutgers, The State University of NJ
Modeling Down Syndrome Using Human Induced Pluripotent Stem Cells
Our research is focused on studying the cellular and molecular basis of human brain development and pathogenesis of neurological disorders by using human induced pluripotent stem cells (iPSCs). We have generated human iPSCs from individuals with Down syndrome (DS). I will introduce our recent research on creating iPSC-based in vitro brain organoid model and in vivo human-mouse chimeric brain model to investigate how aberrant gene expression in DS causes abnormal brain development and leads to early-onset Alzheimer's disease in DS.
Xiao-Fei Kong, M.D., PhD
Assistant Professor of Medicine
Division of Digestive and Liver Diseases, Dept. of Medicine
Columbia University Medical Center
New York City, NY
Immunity and Nutrition in Down Syndrome
Dr. Kong will discuss common problems related to nutrition and gastrointestinal health, such as obesity, diarrhea, and constipation frequently observed in the care of individuals with Down Syndrome. He will talk about primary and subspecialty care for those issues, current practices on screening and management. He will also discuss some of the challenges that he encountered in his clinical practice and his future research goals in Down Syndrome.
Stephan Pinter, PhD
CLOSING KEYNOTE ADDRESS
Genetics and Genome Sciences
A Dynamic in vitro Model Trisomy 21 Gene Dosage in Down Syndrome Neurogenes
Trisomy 21 causes a number of developmental and cellular phenotypes in Down syndrome (DS), raising the critical question of which may remain amenable to correction after completed embryonic development. To begin answering this question, our lab generated a new model of inducible T21 silencing using XIST, the gene that also represses one of two X chromosomes in females. Because our XIST transgene remains inducible in post-mitotic T21 neurons and astrocytes, we can assess for the first time which cellular T21 phenotypes depend on ongoing HSA21 dosage imbalance in terminal cell fates.
Roger Reeves, PhD
OPENING KEYNOTE ADDRESS
Dept. of Physiology and Dept. of Genetic Medicine
Johns Hopkins University School of Medicine
New Models for Down Syndrome Research
Understanding the biology of how development and function differ in people who have three copies of chromosome compared to those with two copies is key to determining how some of those differences might be ameliorated. New animal models with more similarities to people with Down syndrome will support continued advances in this area.
Randall Roper, PhD
Department of Biology
Director, IUPUI Graduate Mentoring Center
Indiana University-Purdue University Indianapolis
What Mice Have Taught Us About Bone in Down Syndrome
All individuals with Trisomy 21 have bone malformations, most observed in the face and stature. Mouse models of Down syndrome have provided important insights into how bone abnormalities develop. Mice have also contributed information about how we may be able to improve bone and other traits in individuals with Trisomy 21. We show how mice are an important partner to improve the lives of individuals with Down syndrome.
Kelly Sullivan, PhD
Linda Crnic Institute for Down Syndrome
Department of Pediatrics, Section of Developmental Biology
University of Colorado, Anschutz Medical Campus
A Clinical Trial for Jak Inhibition in Down syndrome
In this presentation we will describe findings indicating that Down syndrome is condition characterized by interferon-driven immune dysregulation. We will then describe the design of a clinical trial for Jak Inhibitors as a therapeutic strategy for autoimmune skin conditions in Down syndrome. Finally, we will present preliminary data from an interim analysis of this trial.
Yingying (Jennifer) Yang, PhD
Montclair State University
Spatial Cognition in People with Down Syndrome
In this talk, Dr. Yang will discuss her research of spatial cognition in people with Down syndrome. Basic research in human cognition has important implications for understanding the thoughts and behaviors, designing better intervention and training programs, and promoting optimal development for people with Down syndrome.
Alexander's Angels Liaison with
NYU Langone Hospital - Long Island
Lori Benzoni, MPH
Specialist, Program and Events
Department of Pediatrics
NYU Langone Hospital – Long Island
Lori has been working NYU Langone Hospital – Long Island for over 10 years in the department of pediatrics. She runs and oversees various pediatric programs including the Down Syndrome program & Turner Syndrome Program. Lori is grateful to help families receive the quality care they deserve and to link them to resources and providers in the community.
ABOUT The Up of Down: An Insight Into The World of Down Syndrome and the current status of this Conference.
In 2007 Alexander's Angels founded The Up of Down: An Insight Into The World Of Down Syndrome. It typically consists of a panel of experts in various fields to acquaint the community with different aspects of Down syndrome. Symposiums have been hosted by area colleges, high schools, and corporations. Among the panelists there is always at least one self-advocate.
In 2019 the symposium turned into a full-fledged conference with the support of NYU Winthrop Hospital. In keeping with our tradition, self-advocates introduced the speakers.
The conference planned for March 19, 2020, was canceled due to the pandemic, but we are back. For the program brochure scroll down to the end of the page.
SELF-ADVOCATES Introducing the speakers
Commack High School Alumna
Co-Vice President, Alexander's Angels
Jamie, the Co-VP of Alexander's Angels Youth/Self-Advocates Group, is a smart, affectionate, and witty 19-year-old graduate from Commack HS where she passed the Algebra Regents in 2017. Jamie's joys are taking dance class, karate, swimming, and playing with the iPsd.
North Shore High School Alumnus
President, Alexander's Angels
Youth/Self- Advocates Group
Kyle graduated in 2008 from North Shore HS where he received a Peer Achievement Award from the National Honor Society. Kyle is President of Alexander's Angels Youth/Self-Advocates Group and a regular panelist of the Up of Down symposium. Kyle is presently employed part time at the First National Bank of Long Island.
Founder of 321life+1Project
Board Member at NDSS
Brandon is the founder of 321life+1Project where he raises money by selling his art to benefit underserved populations. He is also in the Board of Directors of the National Down Syndrome Society. Brandon is a 2019 Award Holder for the Princess Diana Foundation for his Philanthropic efforts. His mission is to provide reverse inclusion as a Fashion Designer, model, actor, and speaker. He is currently a cast member in the play "Allegiance" where his Japanese Heritage will be on display.
Founder Brittany's Baskets of Hope
2019 L'Oréal Paris Woman of Worth
Brittany Schiavone is the founder of Brittany's Baskets of Hope, a 501(c)3 corporation, that makes and delivers celebratory baby baskets to families that have given birth to a baby with Down syndrome. Each basket contains items that celebrates the babies' birth and provides support and resources to the family. Since 2016, Brittany has delivered over 1,600 baskets in all 50 states. Brittany has been named the 2019 L'Oreal Paris Woman of Worth National Honoree.
Alumna of Grayslake North High School, Illinois
Megan is 27 years old and lives in Lindon Utah. She graduated from Grayslake North High School in Grayslake, Illinois and continued onto complete the adult transition program. She served a yearlong service mission for the Church of Jesus Christ of Latter-Day Saints and then participated in the Wonderwood academy program at Brigham Young University. She currently works at Culver’s and enjoys participating in PALS dance classes, and adaptive show choir. She loves to hang out with her family, write letters to friends, watch movies, read books, and sing and dance.
Esther Gomez-Nieto, MS
President, Alexander's Angels, Inc.
After her retirement, Esther helped found Alexander's Angels named after her grandson Alexander, born with Down syndrome. When not taking care of the organization, she is busy traveling with her husband Juan (Alexander's Angels Treasurer) to enjoy some of their 10 grandchildren living on Long Island, CT, FL, CA, ND and TX.
Alexander's Angels WDSD Ad hoc Committee
Yelena Nemirovskaya, BS
Lab Administrator, St. Giles Laboratory of Human Genetics of Infectious Diseases,
The Rockefeller University, NYC, NY.
Yelena is a Member of Alexander's Angels Board of Directors and PR Committee Liaison. She teamed up with Alexander's Angels through her role as a Lab Administrator in the St. Giles Laboratory of Human Genetics of Infectious Diseases at The Rockefeller University in NY. She loves attending all of the events, including the annual Buddy Walk, WDSD and research conferences, and her family usually joins her, including her one-and-a-half-year-old son, Noah.
Eva Garcia Rodriguez, BS
Lead Clinical Laboratory Technologist
Eva is a Member of Alexander's Angels Board of Directors and Adviser to the organization's Youth/Self-Advocates Group. Born in Colombia and raised in Brooklyn NY. Obtained a science degree in Hunter College and work in a Cell Genetics Laboratory in Northwell. Happily married with three beautiful children. My middle child, Carlani, has Down syndrome. Always willing to volunteer.