Motor neurone disease webinar recording: Perspectives, progress and positivity

We recently hosted a live webinar by the world-renowned Neurologist Dr Richard Bedlack from Duke Health and Duke University School of Medicine in North Carolina, USA as part of Motor Neurone Disease NZ’s (MND NZ) commitment to connecting the MND community with global researchers.

Your questions answered on ALS untangled

While Dr Bedlack was unable to address each individual question received from the audience during the one-hour webinar, he pointed people to the ALSUntangled® website for more answers. Here you will find scientific reviews of alternative and off-label treatments to help patients and families make more informed decisions.

You asked, we delivered

The feedback on Dr Bedlack’s presentation was overwhelmingly positive, with more than 400 registrants. We are still fielding requests for the webinar from people who didn’t register but have heard how good it was from others. You can view the webinar below.

Community feedback

“Prof Bedlack speaks so well, his language of hope is inspiring – I have identified some phrases that I will adopt into my discussions with patients!”

– Health professional

“This is my first time watching an MND info updates webinar. I found it great. I’m very new to learning about this. Will look out for more similar webinars in the future through my MND NZ newsletter.”

– Family member/friend of person living with MND

Webinar content

Richard presented the latest MND/ALS research and insights on a wide range of topics in his trademark hope-filled, relatable and colourful style. Co-hosted by MND NZ Honorary Medical Advisor Dr James Cleland FRACP and MND NZ CE Mark Leggett, this webinar focused on Dr Bedlack’s favourite recent clinical developments and ongoing research including:

• ALS/MND subtypes (ex. Genetic vs. sporadic, upper vs. lower motor neuron predominant)
• Tofersen for SOD1 ALS/MND
• Real world data on riluzole
• Dextromethorphan/quinidine for bulbar dysfunction
• Respiratory strength training exercises
• High glycaemic index diet
• Avoiding GLP-1 modulating meds
• Research on targeting other ALS/MND causes
• Understanding outliers

Find out more about Richard Bedlack, Neurologist in this ABC YouTube Clip .

Thank you

We sincerely thank Dr Bedlack for his inspiring and informative presentation that brings an important message of hope with agency to people impacted by MND and those who support them.