Webinars that address disease-specific issues from the provider, caregiver, and advocate perspectives to provide the child neurology community with a forum for bringing partners’ perspectives together. Pediatric neurologists provide clinical considerations related to the disease-specific issue, caregivers share their experiences and advice, and organizational advocates highlight current resources available to help support both clinicians and families. View past webinars specific to SUDEP, transitions, and medical cannabis.
Child Neurology Community Conversations from the Voices of the Provider, Caregiver, and Advocate
Each year, we host several educational webinars that address disease-specific issues from the provider, caregiver, and advocate perspectives to provide the child neurology community with a forum for bringing partners’ perspectives together. Pediatric neurologists provide clinical considerations related to the disease-specific issue, caregivers share their experiences and advice, and organizational advocates highlight current resources available to help support both clinicians and families. Join experts from the child neurology community for a 75-minute webinar, Let’s talk about Sudden Unexpected Death in Epilepsy (SUDEP): A Conversation with Parents and Doctors.
This webinar provides participants with:
- An introduction to SUDEP, including the known causes, risk for children, how to reduce risk
- Current SUDEP research initiatives
- Strategies families can use when talking with medical providers about a child’s health risks
- The parent perspective of how to best use information about the risk for SUDEP when managing a child’s medical care
- Resources for families as they address the risk for SUDEP
Webinar Panel Participants:
Jeffrey Buchhalter MD, PhD – Professor of Pediatrics and Clinical Neurosciences | Cumming School of Medicine, University of Calgary | Alberta Children’s Hospital
Sarah Friebert, MD – Director, A Palette of Care |Haslinger Division of Pediatric Palliative Care | Interim Director, Center for Health Services Research and Innovation | Rebecca D. Considine Research Institute | Akron Children’s Hospital | Professor of Pediatrics |Northeast Ohio Medical University
Tom Stanton – Executive Director, Danny Did Foundation
Margaret Storey, PhD – Professor of History, DePaul University in Chicago | Board Member, Danny Did Foundation |Parent of Daughter with Aicardi Syndrome
Moderated by Cyndi Wright – SUDEP Advocate
Medical Cannabis in Epilepsy: Recorded on December 13, 2016
- What we know and do not know from the current available evidence on medical cannabis in the treatment of epilepsy
- What role does this evidence and its gaps play in a physician’s behavior and attitude toward cannabis
- What physicians would like caregivers to consider regarding epilepsy treatment with cannabis
- Lessons parents have learned through the use of cannabis as part of their child’s regimen
- Misconceptions about medicinal preparations
- Role of advocacy groups and how caregivers can best engage with these groups to navigate this evolving conversation
- Resources available for education and self-advocacy
Click below to read the 2017 Glossary of Cannabinoid Terms. A helpful resource for anyone wanting to have a better understanding of today’s medical cannabis conversation.
Transitioning to Adulthood: Recorded on October 7, 2016
Transitioning from the pediatric to the adult health care system should be expected for all adolescents living with a neurologic condition. While it will vary amongst adolescents as to how that transition will look, when the transition will happen, or who the transition will involve, the central goal of starting the transition planning discussions early (before age 14 years) is to ensure the youth attains his/her level of optimal independence should guide all transition planning processes.
Join experts from the child neurology community for a 75-minute webinar, Child Neurology Community Conversations from the Voices of the Provider, the Caregiver, and the Advocate: Transition into Adulthood, that will outline the 8 common principles for the neurologist’s role in transitioning youth to the adult healthcare system and how youth, caregivers, and advocates act as equal partners in care to ensure a successful medical transition (as published in Neurology® ).
In this webinar you will learn:
- Why transition and transition planning are important for youth/ families
- The 8 common principles that define the neurologist’s role in transition
- What child neurologists want youth and caregivers to know about transitions
- Examples of successful transitions to emulate
- Readiness tools used by providers and how these tools benefit youth, caregivers, and the child neurology team
- How youth and caregivers can use the 8 common principles to set expectations, and other helpful resources
- What youth and caregivers want providers to know as they approach transition planning