Management of Harmful and Disruptive Behavior for Caregivers
Child Neurology Foundation
Child Neurology Foundation hosted a webinar for Caregivers on Management of Harmful and Disruptive Behavior in Epilepsy and ASD. During this one hour webinar, former CNF President Dr. Ann Tilton shared our findings from surveys that CNF conducted of both families and child neurologists. Dr. Nathan Call from the Marcus Autism Center provided information on effective behavioral treatments for children with severe behavior disorders. Dr. David Dunn, from Indiana University, shared information on using medication to manage behavior. We hope this webinar will give you some ideas for treatment options that you can discuss with your child’s medical team. While this webinar focused on the more severe behavior challenges in epilepsy and autism, we believe the information can be beneficial for both medical professionals and caregivers looking for strategies to address any behavior issues in children with any neurologic conditions.
Special Needs Dentistry
Dr. David Fray
Dr. David Fray has served people with intellectual disability for more than 40 years. He began this professional interest as a dental student assigned to a rotation in a large State School in Texas. His health and public service career has spanned five countries and five US States building healthy lives and systems of care for people with disabilities. Dr. Fray was in private dental practice for 14 years with an emphasis on the care of adults with intellectual disabilites. He is a board certified long-term care administrator. He is a Fellow in the International College of Dentists, Fellow in the American College of Dentists, Associate Professor at the University of Texas School of Dentistry at Houston in the Department of General Dentistry and Dental Public Health. He has been the State Director of Developmental Disabilities Services in Arkansas, Arkansas Children’s Medical Services, Director of the Arkansas Health Center, Chief of the Developmental Disabilities Division in Hawaii and led health teams for the United Nations’ World Health Organization in Asia. He is a board certified healthcare emergency planner serving in refugee relief internationally. He and his wife reside in Dallas Texas and are proud to have four grandchildren.
Autism BrainNet and Dup15q Syndrome
Alycia Halladay, Chief Science Officer
Because of families who have considered the option of brain tissue donation, scientific researchers around the world have made enormous discoveries in understanding what goes on in the brains of people with autism, including those with Dup15q and autism. Specifically, how the brain looks different, functions differently, and what happens on a cellular level that can inform future treatments for ASD. This webinar will provide a short overview of these findings and answer questions about the Autism BrainNet and how crucial it is to the autism community, including those with Dup15q without autism.
Understanding the Brains of People with Dup15q
Daniel Geschwind, MD, Phd
Dr. Daniel Geschwind summarizes new findings on how the brains of people with Dup15q Syndrome and Autism, what makes them work, and how this might signal new target treatments for interventions.
Toll of Caregiving in Parents of Children with Medical Issues
Dup15q Alliance joined with several other rare epilepsy organizations to present a three-part series on the toll of caregiving in parents of children with medical issues.
Eileen Devine is a licensed clinical social worker. You can read more about her here. She is also the author of this blog post. Eileen seeks to provide families with tangible things to do – everything from introspection and reflection (how to do it, why it’s important, etc.) and then more concrete self-care practices that relate to mind/mental health, body (physical health and also nervous system health) and spiritual health. She often also talks about relational stress that is present in family units and parenting partnerships/marriages and what can be done to help strengthen those relationships as well.
UC Davis MIND Institute’s Distinguished Lecturer Series 2018/2019
Edwin Cook, Jr., M.D
The UC Davis MIND Institute’s Distinguished Lecturer Series hosts public lectures by nationally and internationally-recognized researchers in neurodevelopmental disorders. These monthly presentations are intended for both specialists and community members.
Dup15q Alliance Proffesional Advisory Board member Edwin Cook, Jr., M.D., presents Translating the complex genetics of autism
Use of Cannabinoids to Treat Seizures
Orrin Devinsky, NYU
GI Issues in Dup15q Syndrome
Mark Corkins, Le Bonheur Children's Hospital
Seizures and Dup15q Syndrome
Dr. Ron Thibert, Boston Dup15q Clinic
Genetics of Dup15q
Brenda Finucane, Geisinger Health System
Stem Cells and Dup15q Syndrome
Stormy Chamberlain, University of Connecticut
Alternative Treatments for Epilepsy
Professor Bernard Dan, Pediatric Neurologist