DSMIG-USA Learning Library

Table of Contents

Clinical Webinar Series | Speaker Series | Project ECHO


Clinical Webinar Series

Session I: Examining the Impact of Down Syndrome Clinics: An Outcomes Discussion
February 23, 2022
In this 1-hour webinar, participants will hear physicians from three different Down syndrome clinics discuss and share outcome data from both pediatric and adult clients. 
Fran Hickey, MD | University of Colorado Health Sciences Center
Kishore Vellody, MD | University of Pittsburgh School of Medicine
Seth Van Zant, MD 
Mary Stephens, MD | Jefferson Health



Session II: Using Self Advocated in Down Syndrome Clinics

December 6, 2022
In this 1-hour webinar, participants will hear representatives from different Down syndrome clinics discuss a variety of ways to use self-advocates within or related to Down syndrome clinic services. 
Rebecca Partridge, MD | Viriginia Mason Medical Center
Angela Lombardo, MSW | Boston Children's Hospital
Nina Powell-Hamilton, MD | Nemours/Alfred I. DuPont Hospital for Children
Lauren Davey | Nemours/Alfred I. DuPont Hospital for Children
Anne Marie Dolinish-Meltzer | Eastern Pennsylvania Down Syndrome Center
Brian Meltzer | Eastern Pennsylvania Down Syndrome Center
Brian Chicoine, MD | Advocate Medical Group Adult Down Syndrome Center, Advocate Lutheran Genral Hospital


Session III: Exploring Funding for Down Syndrome Clinics
June 13, 2023
One of the challenges for many Down syndrome clinics across the country is how their clinic will be funded. In this webinar, representatives from three different Down syndrome clinic highlight a variety of funding sources along with tips and ideas for implementation. 
Erin Kelly | Down Syndrome Center of Western Pennsylvania
Lauren Want | University of Cincinnati Health Primary Care
Janice Nodvin | Adult Disability Medical Healthcare


Speaker Series

Session I: Down Syndrome 101 and 202
November 2, 2022
This session is intended for primary care physicians, specialty physicians, advanced practice providers, psychologists, dietitians, occupational and physical therapists, speech-language pathologists, social workers, genetic counselors, research scientists, residents, and trainees. 
Peter Bulova, MD | University of Pittsburgh Adult Down Syndrome Center
Mary Stephens, MD, MPH | Jefferson Health
CME Credit Registration


Session II: Adult Healthcare Guidelines The First Evidence-Based Medical Care Guidelines for Adults with Down Syndrome: What Medical Providers Need to Know!
January 11, 2022
In this webinar, GLOBAL Guideline authors will share the 9 medical topics covered in the first version of the guidelines and the evidence supporting the guidelines' 14 recommended statements. Attendees will learn how to access and share the Global Guidelines with their patients, plus get a look at the newly created toolkits, language translations and family-friendly version. In addition, the speakers will share the current gaps in the literature base and the future research needed for the next Global Guideline update expected in 2025-26. 
Peter Bulova, MD | University of Pittsburgh Adult Down Syndrome Center
Brian Chicoine, MD | Advocate Medical Group Adult Down Syndrome Center, Advocate Lutheran Genral Hospital
Bryn Gelaro, LSW | Global Down Syndrome Foundation
CME Credit Registration


Session III: Behavioral Strategies in Down Syndrome: A Multi-Disciplinary Approach
November 2, 2022
In this webinar, Drs. Patel and Frank discuss the following in relation to individuals with Down syndrome of all ages:
- Common behaviors and the reason for them
- Strategies that can be used to address these behaviors

- Different approaches to behavior by discipline
Lina Patel, PsyD | University of Colorado School of Medicine
Katie Frank, PhD, OTR/L | Advocate Medical Group Adult Down Syndrome Center
CME Credit Registration


Session IV: Pediatric Guidelines
October 25, 2022
In this webinar, Dr. Bull shares an informative update on the Pediatric Guidelines. 
Marilyn J. Bull, MD | Indiana university of Medicine, Riley Hospital for Children
CME Credit Registration


Session V: Regression & Down Syndrome Part 1
May 14, 2023
Individuals with Down syndrome may experience regression in previously acquired skills. This two-part webinar will present panel discussions on regression, with a key focus on Down Syndrome Regression Disorder (DSRD). This condition occurs most commonly between the ages of 10 and 30 years and is associated with loss of skills in language, cognition, behavior, motor and adaptive skills. Discussion will include what we know currently about DSRD diagnosis and management. 
Eileen A. Quinn, MD | UT College of Medicine and Life Sciences
Lina Patel, PsyD | University of Colorado School of Medicine
Robyn Filipink, MD | UPMC's Children's Hospital of Pittsburgh
Cathy Franklin, MBBS, FRANZCP, MPhil | University of Queensland


 Session VI: Regression & Down Syndrome Part 2

May 9, 2023
Individuals with Down syndrome may experience regression in previously acquired skills. This two-part webinar will present panel discussions on regression, with a key focus on Down Syndrome Regression Disorder (DSRD). This condition occurs most commonly between the ages of 10 and 30 years and is associated with loss of skills in language, cognition, behavior, motor and adaptive skills. Discussion will include what we know currently about DSRD diagnosis and management. 
Eileen A. Quinn, MD | UT College of Medicine and Life Sciences
Lina Patel, PsyD | University of Colorado School of Medicine
Jonathan Santoro, MD | USC
Cassie Karlsson, MD | UK School of Medicine - Wichita


Session VII: Supporting Healthy Sexuality in the Healthcare Setting for your Patients with Down Syndrome
December 5, 2023
Participants will understand how attitudes impact sexuality education, learn common sexuality concerns reported by families, and identify helpful roles and resources for supporting families in their healthcare practice. 
Terri Couwenhoven, MS, CSE | Children's Hospital of Wisconsin
Katie Frank, PhD, OTR/L | Advocate Medical Group Adult Down Syndrome Center


 Session VIII: Increasing Coping and Adjustment to Medical Care for Patients with Down Syndrome
March 25, 2024
Attendees will be able to identify at least one preventative strategy to increase the likelihood that a patient with DS will be able to successfully tolerate a medical intervention or assessment, gain knowledge about exposure-based interventions, and explain the risks associated with using holds or restraints in the delivery of medical care. 
Gregory Young, PhD, LABA, BCBA | Franciscan Children's


Project ECHO

DS ECHO Didactic from 4/19/2023
April 19, 2023
Attendees will be able to: 
- Describe current challenges with access to care for individuals with Down syndrome (DS)
- Summarize how DSMIG-USA is working to improve access to information about care for individuals with DS
- Identify resources available to support evidence-based care/best practices for care of children and adults with DS
- Describe the model of Project ECHO and how it serves to promote knowledge
Maria Stanley, MD | University of Wisconsin School of Medicine and Public Health


DS ECHO: Why did that Anesthesiologist look scared? 
May 17, 2023
In today's episode, we'll learn: 
- What are the three things that keep anesthesiologists up at night? 
- What about patients with Down syndrome make anesthesia providers nervous? 
- What are five pieces of information clinicians can provide to calm the anxieties of their neighborhood anesthesiologists? 
James Hunt, MD | Arkansas Children's Hospital


DS ECHO: OT Does Not Stand for the 'Other Therapy': Skills for the Job of Living
June 28, 2023
Today's agenda: 
- Regression of skills in Down syndrome
- Role of occupational therapy in regaining skills
Katie Frank, PhD, OTR/L | Advocate Medical Group Adult Down Syndrome Center


DS ECHO: Preparticipation Evaluation of People with Down Syndrome for Special Olympics
September 20, 2023
Providing comprehensive primary care For Adolescents and Beyond with complex childhood-onset conditions.
Mary Stephens, MD | Co-Director, Jefferson FAB Center for Complex Care


 DS ECHO: Transitioning from Pediatric to Adult Care

November 15, 2023
- What is your Why? 
- Transition Pitfalls
- Philosophical Framework for Transition
- Operationalize a Transition Tool Kit
Andrew McCormick, MD | Director, Healthy Transitions Program, Down Syndrome Center of Western Pennsylvania


DS ECHO: Behavioral Challenges in Down Syndrome

December 13, 2023
- The goal is improvement, not perfection.
- Intervention strategies should take neurodevelopmental profile into account. 
- Celebrate successes along the way!
Nicole Baumer, MD, MEd | Neurodevelopmental Disabilities Director, Boston Children's Hospital Down Syndrome Program


 DS ECHO: Social Skills and Individuals with Down syndrome

February 21, 2024
Identify social skills that may be challenging for individuals with Down syndrome. 
- Understand why these skills can be difficult to demonstrate. 
- Discuss practical strategies to teach social skills. 
Katie Frank, PhD, OTR/L and Abby Rowley, LCSW | Adult Down Syndrome Center Advocate Medical Group


 DS ECHO: Nutrition & Down syndrome
March 20, 2024
Listen to the person and their family.
- Healthy lives begin with trust. 
- The Feeding Relationship.
Joan Medlen, MED, RDN | Medlen Consulting, LLC


 DS ECHO: Neurologic Manifestations of Down Syndrome Regression Disorder
April 17, 2024
Meghan O'Neill, MD, FAAP | NIH Medical Officer - INCLUDE Project


DS ECHO: Psych Medications Down Syndrome
May 15, 2024
Elise M. Sannar, MD | Sie Center for Down Syndrome