Webinars Library

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Webinars hosted by RASopathies Network

We welcome webinar topics ideas!
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Link to Webinar: Learning How to Learn – This World Needs People with Learning ‘Disabilities’

with DJ Cunningham, CEO and co-founder of LEARNstyle Ltd, Ontario, Canada’s largest K-12 educational training company, IEP and Special Education Software provider. DJ’s passion for special education and technology stems from his personal experience growing up with a learning disability and ADHD.

Link to Webinar: Cure ID’s RASopathy Survey

CURE ID is a platform to collect information about use of repurposed drugs. Think of it as a ‘treatment registry’. The FDA, NIH/NCATS, and C-Path have teamed up with clinicians and patient advocates to generate a survey to track use of medications, like MEK and mTOR inhibitors. Data about the indication the drug was used for, the side effects, how long the drug was used, and other possible impacts can be aggregated and serve as a resource to share or analyzed further to gain therapeutic insights. We host Shira Strongin (NCATS) to walk through the CURE ID platform and what information is collected and we hear from Honey Sayler (Parent Advocate), and Samantha Spires (Parent Advocate) about their experiences accessing and using a repurposed drug for a RASopathy condition. CURE ID RASopathies Survey can found here: https://cure.ncats.io/home Contact RASopathies Network with questions: [email protected]

Link to Webinar: Tethered Cord: Implications for the RASopathies

Petra Klinge, MD, is an internationally renowned general neurosurgeon specializing in the surgical treatment of patients with brain tumors, hydrocephalus and Alzheimer’s disease, pediatric diseases and treatment of congenital diseases like Chiari and spinal malformations, talks about occult tethered cord and its effects. Patricia Weltin, parent advocate, and CEO/Founder of Beyond the Diagnosis, brought to our attention the prevalence of tethered cord among a number of rare diseases. Due to the presence of tethered cord among people with a RASopathy, particularly Costello syndrome, as well as a list of a list phenotypical issues that are shared with the RASopathies, learning about what tethered cord is, how it can affect the body, how it is treated, and red flags to rule it out can be important for individuals affected by a RASopathy.

Link to Webinar: RASopathies: Study of Brain and Cognitive Development in Children with Noonan syndrome and NF1

by Tamar Green, MD, Assistant Professor of Psychiatry and Behavioral Sciences at Stanford School of Medicine, and Principal Investigator at BRIDGE Lab, which stands for BRain Imaging, Development and GEnetics,

Dr. Green provides an update on her lab’s study of brain and cognitive development in children with Noonan syndrome and NF1.

webinar graphic Brain and Cognitive Development in RASopathies

Link to Webinar: An Update on the Clinical Trial Using Vosoritide for Growth in Noonan Syndrome (and other RASopathies)

by Andrew Dauber, MD, MMSc, Chief of Endocrinology, Children’s National Hospital, Washington, DC.

If you have questions about joining the Study, contact [email protected]

webinar graphic Update on short stature vosoritide trial

Link to Webinar: Exploring MEK inhibitors: What are they and what are the common side effects in pediatric patients,

by Tara McKeown, MN NP‐Pediatrics, Nurse Practitioner, Neuro‐Oncology, The Hospital for Sick Children, Canada, introduced by Andrea Cote, board member of RASopathies Network