2017 Patient Advocacy Summit Speakers

 

Our line-up of speakers is growing and we could not be more excited! We are working hard to bring you a variety of speakers covering a wide-range of topics. The Friday conference sessions are adults only to allow the parents and family members time to concentrate, take notes, formulate questions and network with other families.

We hope you are as excited as we are to welcome the following speakers! Check back for updates!

 

Dr. David A. Koolen, MD, PhD.

Dr. Koolen will deliver a presentation titled “The Clinical Spectrum of KdVS” and participate in a question and answer session.

Dr. Bert de Vries, MD, PhD.

Dr. de Vries will deliver a presentation titled “Getting to KdVS: a History”.

Speaker from Radboud University Medical Center

A speaker from the Radboud University Medical Center, Nijmegen, the Netherlands will be presenting an update on the underlying mechanisms and molecular data regarding Koolen-de Vries Syndrome. This presentation will include information about the skin biopsies obtained in 2015 and other models that are being used to study KdVS on the cellular and molecular level.

Dr. Angela Morgan 

Prof. (Dr.) Morgan is an academic speech pathologist and Head of Discipline at the University of Melbourne, Australia. Angela has been a clinician-researcher for 20 years, focused on understanding causation and symptoms of childhood speech and language disorders. She is currently Director of the National Health and Medical Research Council Centre of Research Excellence on the neurobiology of childhood speech and language disorders. Her current research is aimed at learning more about genetic causes of speech and language disorders, and also about the specific symptomatologies associated with specific genetic syndromes with the view to develop more targeted speech therapies.

Dr. Morgan will be discussing the results of a study describing the speech, language, literacy and social skill abilities of individuals with KdVS aged from infancy to adulthood.

Ken Myers, MD PhD FRCPC 

Dr. Myers is a pediatric neurologist from Canada, trained at the Alberta Children’s Hospital in Calgary, Alberta.  He is currently engaged in a clinical-research epilepsy fellowship in Melbourne, Australia, with a large epilepsy genetics research group headed by Professors Sam Berkovic and Ingrid Scheffer.  His research is aimed at learning more about genetic causes of epilepsy, including how to improve treatment and family counseling for specific genetic epilepsy syndromes.

Dr. Myers will be discussing the results of a study describing the clinical, EEG and MRI findings in 31 people with KdVS and seizures.  He has found that although there is a wide spectrum of epilepsy in KdVS, there are common features seen in the patients who have seizures.  There is also a typical pattern of structural brain malformation on MRI, most commonly involving enlarged ventricles and malformations of the corpus callosum and hippocampi.  He will also discuss the results of a follow up study in which we looked for variants in the KANSL1 gene in patients who had similar forms of epilepsy but without the other features of KdVS.

V. Mark Durand, Ph.D.

V. Mark Durand, Ph.D. is known worldwide as an authority in the area of autism spectrum disorder. He is professor of psychology at the University of South Florida St. Petersburg, where he was the founding Dean of Arts & Sciences and Vice Chancellor for Academic Affairs. He has received more than $4 million in federal funding since the beginning of his career. Dr. Durand is currently a member of the Professional Advisory Board for the Autism Society of America and was co-editor of the Journal of Positive Behavior Interventions, and has more than 125 publications. His books include two textbooks on abnormal psychology that have been translated into 10 languages and used in more than 1,000 universities world-wide. His other books include the multiple national award winning Optimistic Parenting: Hope and Help for You and Your Challenging Child, and most recently, Autism Spectrum Disorder: A Clinical Guide for General Practitioners. He was named a 2014 Princeton Lecture Series Fellow and received the 2015 Jacobson Award for Critical Thinking from the American Psychological Association for his body of work in the field of autism spectrum disorder. Starting January 2017, Dr. Durand will serve as President-Elect Designate of Division 33 in the American Psychological Association. The division is focused on Intellectual and Developmental Disabilities/Autism Spectrum Disorder (ASD).  The three-year position will entail serving as President-Elect Designate the first year, President-Elect in 2018, and President in 2019.

Dr. Durand, who has also authored the book, Sleep Better!: A Guide to Improving Sleep for Children with Special Needs, will be delivering a presentation on improving sleep and solving sleep problems.

Eugenia Kim and Jeff Berg

Eugenia Kim and Jeff Berg will be presenting about their experiences with their child (now an adult living with Koolen-de Vries Syndrome) and their experiences transitioning their son into adulthood and the workforce.