Individuals & Families

Dec 2020 

In this webinar we welcome paediatric oncologist at the Children's Hospital Westmead and clinical lead for the upcoming Australian TiNT MEK Inhibitor Clinical Trial, Dr Geoff McCowage.  

This a unique opportunity to hear directly from the person who is responsible for ensuring this trial is made available to Australian and New Zealand patients and will cover the following topics:

• What is a MEK inhibitor
• How do MEK inhibitors work in NF    
• Prior research into MEK Inhibitors    
• Timing and eligibility criteria for the Australian TiNT clinical Trial

Sep 2020 

In this webinar NF1 mum and solicitor, Ellen Pacelli, and her colleague Malcolm Stoddart from Owen Hodge Lawyers take us through the importance of planning for you and your families future. If you cannot see the subtitles, these can be enabled in the settings. 

Feb 2018 

Presented by Mr Mark Balwin, a Melbourne-based private plastic surgeon who has experience with removal of NFs via electro desiccation and other methods.

May 2018 

Presented by Associate Professor Nigel Biggs a head and neck surgeon at St. Vincent’s Hospital in Sydney covering the latest treatment options for complications of NF2 and Schwannomatosis.

Download the transcript or watch the video below.

March 2019 

Presented by Dr Jane Ho & Fabienne Edema-Hildebrand regarding transitioning from paediatric to adult care. 

DOWNLOAD THE WEBINAR TRANSCRIPT

July 2019 

Presented by Dr Aaron Schindeler (CHW) and Dr Kristina Haebich (MCRI) outlining the process of developing an idea into a clinical trial. Dr Schindeler describes his study on Muscle Weakness in children with NF1.  

International guest speaker Prof Michael Fisher, Chief of Neuro Oncology, Children’s Hospital of Philadelphia was joined by some of Australia’s leading NF specialists. The audience consisted of parents and individuals living with NF. 

We have compiled a summary of each presentation for you to download and review. 

• INTERNATIONAL RESEARCH UPDATE - Prof Michael Fisher (CHOP) 
• TREATMENT OF SKIN IN NF1 - Associate Professor Mimi Berman (RNSH)
• LEARNING DIFFICULTIES IN CHILDREN WITH NF1 - Dr Belinda Barton (CHW)  
• MEK INHIBITOR CLINICAL STUDY  - Dr Geoff McCowage (CHW)
• TREATMENT OF NF2 - Associate Professor Nigel Biggs (SVHS)

Click each link to view a video recording of each presentation.

• Introduction from Mr John Hughes – CTF Chairman  
• Prof. Bruce Korf: Genomics and NF  
• Cognitive Issues and NF1: Current Research – Anita Chisholm 
• Auditory Processing Condition Research in NF1: Alice Maier  
• Speech issues in NF: Rachel Kerr  
• What Are You NF2? The Ride Ahead: Adam & Kukame  
• NDIS: Heather Renton (Self Management Support)  
• Able Australia: Supports and Services Available: Carla Anderson  
• NF at The Royal Melbourne Hospital: A/Prof Kate Drummond  
• Supports for People with NF2: Matthew Grounds