Global Down Syndrome Foundation
Research & Medical Care Roundtable 2013

Global Down Syndrome Foundation Launches National Research & Medical Care Roundtable, Highlights 21 Pre-Eminent Experts in One “Phenomenal” Day

Roundtable attracts over 400 people from 40 states and 8 countries to Children’s Hospital Colorado in conjunction with the NDSC Annual Convention


Press

National Down Syndrome Congress Convention Underway in Denver (CBS4)

Global Down Syndrome Foundation & NDSC Roundtable & Convention (7News)

DNA From Those With Down Syndrome Helps In Autoimmune Disease Research (CBS4)

Front Range Focus: Global Roundtable (KOA radio)

National Down Syndrome Congress Convention in Denver (Kathie J for the Community, 107.5FM)

Testimonials

“I thought the roundtable was fabulous, start to finish. It was beautifully organized; the speakers were very carefully chosen, and all were interesting. The question periods were outstanding. Lots of really penetrating questions that resulted in speakers getting more deeply into the important issues. It was a very exciting day.”

“The Roundtable was – in a word – phenomenal! I came as the sole representative of a small Down syndrome group with hopes to gather information to take back and share with other families. While that certainly happened, what really caught me by surprise was that I gained information that gave me a plan of action for some of the chronic medical concerns my own daughter is facing. I will return with far more than information; I have a renewed sense of purpose with my daughter’s physical and mental health at the center! The panelists were a wealth of knowledge combined with experience, wisdom and care that was positively energizing. Kudos to Global for pulling this off!”

“It was a great pleasure to speak in the Global Research & Medical Care Roundtable. To have fellow top scientists speak from diverse points of view in one venue was very educational to all of us. Even more important were the other participants. Seldom have I participated in a public symposium with such a large and engaged audience. The questions were thoughtful and informed and brought out many areas of common interest. All in all, it was a great day.”

“It was a privilege to present on the prenatal testing panel with Michelle Whitten and other professionals in the community. This subject is at the heart of the work we do at the NDSC in providing accurate, up-to-date information to expectant women. I was floored by the number of attendees at the Roundtable! While I was only able to see a small part of the day, I was told again and again by Roundtable attendees how much they learned and how much they appreciated the opportunity to hear from such amazing experts. Great job, Global!”

“I appreciated the opportunity to speak at the roundtable. I found it very valuable both professionally and personally to understand more from a family’s perspective. I received very valuable comments and feedback from attendees that will be helpful in having better dialogs between the Down syndrome and Alzheimer’s communities. Additionally, the individuals invited were excellent.”

“These speakers were all so good, knowledgeable and easy to listen to and relate to. Thank you for all your hard work in putting on this amazing event!”

“Thought the entire roundtable was excellent. Thank you!”

“Q & A – fantastic.”

“Wonderful roundtable! The wealth of information was far more than I expected.”

“Great venue. Wonderful opportunity to allow families to hear about research, discoveries and opportunities.”

“Hats off to Michelle Sie Whitten and everyone involved in planning and presenting this roundtable. The breadth and depth of topics in one short day is commendable. That it was free is incredible. … You fill me with hope for the future for individuals with Down syndrome and their families.”

“Loved all the science stuff! So very interesting to understand what is all going on and what type of research is underway. It is amazing to me all that is known and is inspiring as to what may lay on the horizon. So very happy I was able to attend today! Amazing! Loved it!!”

“Wonderful day, filled with valuable information.”

“Well-run roundtable. Organized with an excellent diversity of topics and very good speakers. A huge success.”


Photos

Roundtable Photos

Global Roundtable

Concert Photos

Colbie Caillat


Speakers and Presentations

To view the presentations, click on each speaker’s presentation title.

Global RoundtableMedical Care Panel

Prenatal Testing Update

Lunch Presentations

Basic Research Panel

Down Syndrome—Alzheimer’s Disease Panel

Medical Care Panel

Francis Hickey, MD
Medical Director, Anna and John J. Sie Center for Down Syndrome, Children’s Hospital Colorado and Linda Crnic Institute for Down Syndrome, Department of Pediatrics, University of Colorado School of Medicine
Clinical Care and the Importance of Clinical Research in Down Syndrome
Peggy Kelley MD FACS FAAP
Pediatric Otolaryngology, Attending Physician, Children’s Hospital Colorado;
Associate Professor of Otolaryngology, University of Colorado, Denver
Ear, Nose and Throat Issues in Children with Down Syndrome
Dennis McGuire, PhD
Director of Psychosocial Services, Adult Down Syndrome Center of Lutheran General Hospital
Mental Wellness and Good Health in Teens and Adults with Down Syndrome
George Capone, MD
Director, Down Syndrome Clinic and Research Center, Kennedy Krieger Institute;
Associate Professor of Pediatrics, Johns Hopkins University School of Medicine
Characterizing Depression and Coexisting Sleep Disorders in Adolescents & Adults with Down Syndrome
Peter D. Bulova, MD
Associate Professor of Medicine, University of Pittsburgh;
Director, International Scholars Program;
Co-Director, Magee Center for Women with Disabilities;
Director, University of Pittsburgh Adult Down Syndrome Center
The Health Benefits of Down Syndrome

 


Prenatal Testing Update — view presentation

Sue Joe
Affiliate Relations Director, National Down Syndrome Congress
Michelle Sie Whitten
Executive Director, Global Down Syndrome Foundation
Chair, Colorado Host Committee of the 2013 NDSC Annual Convention
Michelle Sie Whitten
Dan Ketcherside
Director, Professional Relations, Scientific Affairs Sequenom CMM, Inc.
Dan Ketcherside
Kelly M. Lennon, MD
OB/GYN, South Denver Obstetrics and Gynecology, PC
Alberto Gutierrez, PhD
Director, Office of In Vitro Diagnostics and Radiological Health, U.S. Food and Drug Administration

 


Lunch Presentations

DeOndra Dixon
Global Down Syndrome Foundation Ambassador;
Quincy Jones Exceptional Advocacy Award Recipient
Yvonne Maddox, PhD
Deputy Director, National Institute of Child Health and Human Development
The Importance of Down Syndrome Research and Community Involvement
Yvonne Maddox, Deputy Director of NICHD

 


Basic Research Panel

Roger Reeves, PhD
Professor, Department of Physiology, Johns Hopkins University School of Medicine
DS360: Establishing a Comprehensive Genotype <> Phenotype Study of Down Syndrome
Roger Reeves
Katheleen Gardiner, PhD
Professor, Department of Pediatrics, Linda Crnic Institute for Down Syndrome, University of Colorado Denver
Before Clinical Trials for Cognition in Down Syndrome: Challenges & Approaches in Model Systems
Katheleen Gardiner
William Mobley, MD, PhD
Executive Director, Down Syndrome Center for Research and Treatment, UC San Diego
Cognition Research in Down Syndrome: The Turning Tide in Defining and Delivering Treatments
John Crispino, PhD
Robert I. Lurie, MD and Lora S. Lurie Professor of Medicine;
Associate Director of Education, Robert H Lurie Comprehensive Cancer Center
Leukemia in Children with Down Syndrome
John Crispino
Tom Blumenthal, PhD
Executive Director, Linda Crnic Institute for Down Syndrome;
Anna and John J. Sie Professor in Genomics, University of Colorado School of Medicine; Professor, Molecular, Cellular and Developmental Biology, University of Colorado Boulder
Down Syndrome: How Does the Extra Chromosome 21 Cause the Condition?
Tom Blumenthal

 


Down Syndrome-Alzheimer’s Disease Panel

Ira Lott, MD
Pediatric Neurologist, UC Irvine and CHOC Children’s;
Director, Telemedicine Program UC Irvine Health Sciences;
Emeritus Professor of Pediatrics and Neurology, UC Irvine School of Medicine
Down Syndrome and Dementia
Jorge Busciglio, PhD
Professor, Department of Neurobiology & Behavior, UC-Irvine;
Fellow, Center for the Neurobiology of Learning and Memory (CNLM);
Member, Institute for Memory Impairments and Neurological Disorders (iMIND)
The Importance of Down Syndrome Cell Models
Dean Hartley, PhD
Director of Science Initiatives, Medical and Scientific Relations, Alzheimer’s Association
Alzheimer’s Association Research Initiatives
Huntington Potter, PhD
Director of Alzheimer’s Research, Linda Crnic Institute for Down Syndrome;
Director of Alzheimer’s Research, Department of Neurology, University of Colorado Denver
Two Sides of the Same Coin — Alzheimer’s and Down Syndrome
Michael Greher, PhD
Assistant Professor of Neurosurgery at the University of Colorado School of Medicine
Neuropsychology of Alzheimer’s and Down Syndrome

 


Musical Performance by Grammy-winner Colbie Caillat

The Global Down Syndrome Foundation was pleased to host a private, invitation-only concert by Grammy Award-winner Colbie Caillat for attendees to the Research & Medical Care Roundtable on the evening of July 18, 2013, at the Paramount Theatre in Denver.

Colbie Caillat
Colbie Caillat
Grammy-winning Singer/Songwriter
Top hits include “Bubbly” and “Lucky”

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