We are delighted to have a number of PVNH specialists and other advocates participate in the PVNH conference.
Here is a list of our speakers for the World PVNH Conference in Vancouver, BC, Canada.
Carlos Cardoso, France: Carlos Cardoso, PhD in Neurgogenetics, is Co-Team Leader “Cortical development disorders and epilepsy” at the Mediterranean Institute of Neurobiology and Principal Investigator at the INSERM. He has a particular interest in the molecular mechanisms and pathophysiology of Periventricular Nodular Heterotopia.
Bernard Chang, USA (remote): Bernard Chang, MD, is a member of the Department of Neurology at Beth Israel Deaconess Medical Center (BIDMC) and Assistant Professor of Neurology at Harvard Medical School. He leads the Bernard Chang laboratory which researches epilepsy and the cognitive impact of PVNH, in particular, dyslexia and reading problems, among other topics. A neurologist who specializes in epilepsy and has a clinical and research interest in PVNH, Dr. Chang has met and taken care of a number of adult patients with PVNH. He is the principal investigator of a research study, funded by the U.S. NIH, aimed at understanding the causes of epilepsy in PVNH.
Dr. Stephen Robertson, New Zealand (remote): Stephen is the Curekids Professor of Paediatric Genetics at the University of Otago in Dunedin. He was educated at the University of Otago graduating in Medicine in 1990. He specialized in Paediatrics and Clinical Genetics after training in Auckland and Melbourne. From 1999–2002 Stephen was Nuffield Medical Fellow at Oxford University, studying the genetic determinants of congenital malformations in children. His work has led to the implication of a new family of genes, the filamins, in the generation of these conditions. He remains an active clinical geneticist as well as continuing his research into congenital malformations.
Dr. Anthony Vandersteen, UK / Canada : Dr. Vandersteen is staff physician in Medical Genetics at IWK Health centre in Halifax, Nova Scotia, and assistant professor at Dalhousie University. He is UK trained in internal medicine, hold fellowship of the Royal College of Physicians of London (UK) and Canada, with specialist certification in Medical Genetics. He holds a Masters degree, PhD and postdoctoral fellowship in nucleotide chemistry and drug discovery. He previously worked in the UK National Ehlers-Danlos Syndrome Diagnostic service, and has a practice in general medical genetics with an interest in hereditary disorders of connective tissue.
Dr. Ute Hehr, Germany: Professor Hehr is a geneticist at the Center for Human Genetics Regensburg. She has extensive experience researching neuronal migration disorder and has recently conducted a study on FLNA affected individuals, among other work as the Director of Hehr Laboratory.
Sheila Kennedy, Canada: Recreation Therapist /Professional Practice Leader for Therapeutic Recreation at Sunny Hill Health Centre for Children. Sheila has a BA in Recreation Administration from the University of Alberta and a Diploma in Therapeutic Recreation from Douglas College. She is a member of the Advisory Board for the Applied Degree Program in Therapeutic Recreation at Douglas College, and actively supports a number of current research projects that have an emphasis on participation and quality of life. Sheila has worked in the field of Therapeutic Recreation for many years and is passionate about the potential benefits recreation participation can offer.
Gemma Isaac, Canada: Gemma is an accredited (MTA) music therapist and certified in Neurologic Music Therapy from the Neurologic Music Therapy Training Institute at Colorado State University. As the music therapist at the Burns, Plastic and Trauma Unit (BPTU) at VGH, Gemma facilitates music therapy programs for patients, their families, and healthcare staff alike. Currently she is involved in designing research on the effects of music therapy on pain perception and anxiety for patients with major trauma at the BPTU. Gemma is the current President and a member of The Music Therapy Association of BC and a member of The Canadian Music Therapy Association, The American Music Therapy Association, the World Federation for Music Therapy, Canadian Association of Burn Nurses, The American Burn Association, and the Trauma Association of Canada. She also has a small private practice working with a range of clients such as children with special needs and stroke recovery groups.
Chad Farquharson, Canada: Father to his super-amazing son who just happens to have a rare life-threatening disease, Chad has become an advocate over the last five years. He had worked to change Government funding models, speaks at corporate events, and is now championing big changes within the school systems. Chad has come to learn what it takes to be a successful advocate (and it’s not at all what you’d expect) and he will be sharing that knowledge and journey with you.