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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.  

SPEAKERS

(listed alphabetically)

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Jamie Edgin, PhD

Associate Professor

Director, Cognition and Neural System Program

Director, Memory Development and Disorders Lab

Department of Psychology

University of Arizona

Tucson, AZ

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.

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Peng Jiang, PhD

Assistant Professor

Department of Cell Biology and Neuroscience

Rutgers, The State University of NJ

Piscataway, 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.

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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.

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Stephan Pinter, PhD

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Assistant Professor

Genetics and Genome Sciences

UConn Health

Farmington, CT

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.

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Roger Reeves, PhD

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Professor

Dept. of Physiology and Dept. of Genetic Medicine

Johns Hopkins University School of Medicine

Baltimore, MD

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.

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Randall Roper, PhD

Associate Professor

Department of Biology

Director, IUPUI Graduate Mentoring Center

Indiana University-Purdue University Indianapolis

Indianapolis, IN

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.

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Kelly Sullivan, PhD

Associate Professor

Boettcher Investigator

Linda Crnic Institute for Down Syndrome

Department of Pediatrics, Section of Developmental Biology

University of Colorado, Anschutz Medical Campus

Aurora, CO

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.

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Yingying (Jennifer) Yang, PhD

Assistant Professor

Psychology

Montclair State University

Montclair, NJ

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

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Lori Benzoni, MPH

Specialist, Program and Events

Department of Pediatrics

NYU Langone Hospital – Long Island

Mineola, NY

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

(listed alphabetically)

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Jamie Bernstein

Commack High School Alumna

Co-Vice President, Alexander's Angels

Youth/Self-Advocates Group 

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. 

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Michael Joseph Castro

 Student at Port Jefferson Middle School. 

Mikey is 13 years old and is in 7th grade Port Jefferson Middle School  Mikey plays soccer, is involved in karate, school drama club, and loves to travel.  He has two older brothers, who love him very much.

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Kyle Erickson

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.

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Brandon Gruber

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.

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Katherine "Katie" Rosenson

West Islip High School Alumna

Katie is a 22-year-old Artist and Self-Advocate from West Islip who Self-Directs her services. attends classes at Stony Brook University, works as a hostess at Flannigan's Pub in Lake Grove, love to dance, sing, and create amazing artwork.

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Meghan Schaefer

Alexander's Angels Co-PR Coordinator/Social Media

Meghan is a senior at Commack High School, graduating in 2022.  She is a multi-sport Special Olympics athlete and has participated in the state games.

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Brittany Schiavone

Founder Brittany's Baskets of Hope

 2019 L'Oréal Paris Woman of  Worth

National Honoree

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.

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Megan Witt

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. 

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Esther Gomez-Nieto, MS

President, Alexander's Angels, Inc.

Alexander's Grandmother

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. 

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Eric Klein, MBA

Managing Director, Bridge Growth Partner

Eric Klein became involved with Alexander’s Angels through his wife, Yelena Nemirovskaya and joined the Board in 2020. He avidly participates in all of the great events to support Alexander’s Angels. 

Alexander's Angels WDSD Ad hoc Committee

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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.

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Eva Garcia Rodriguez, BS

Lead Clinical Laboratory Technologist

Northwell Health

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.