Making the Most of Now

Clive Phillips
  • 4.7 (3)
  • Health & Fitness

The podcast brings together the Multifocal Motor Neuropathy community to discuss this rare neurological condition and related ones. We talk to medical experts, patients and their supporters in the hope of informing and inspiring.

  1. 17h ago

    Steps Of Strength - Trekking the Kokoda Trail with GBS - Global GBS awareness campaign

    In this episode, I chat to Sienna James about her GBS journey and her remarkable Steps Of Strength project that aims to raise awareness of GBS around the globe.  In December 2026 only two years after Guillain-Barré Syndrome (GBS) left her unable to walk, Sienna James will attempt to walk the Kokoda Trail a mountainous, 96km jungle path in northern Papua New Guinea.  Accompanied by one of her oldest friends and a guide, Sienna is aiming to complete this arduous route made famous by the exploits of the Australians and Papua New Guineans who fought the Japanese there during World War Two. Sienna is aiming to complete the journey not just as part of her ongoing rehabilitation, but in order to raise awareness of GBS around the globe. To help achieve this she is planning to be joined by Silvereye Films Matt Jenke who will capture the trek and Sienna's GBS journey on film. US$50,000 is required to make this project and the film a reality. Sienna is raising money now.  To learn more go to https://makingthemostofnow.co.nz/stepsofstrength/. To donate direct to the project go to https://www.gofundme.com/f/conquering-guillain-barre-syndrome-kokoda Interested in sponsoring the project contact us at clive@makingthemostofnow.co.nz

  2. Aug 30

    The Road to LA28 - Paralympics Series with Ben Watson - #2 - Gearing up for the Worlds

    As he prepares for the World Championships in Huntsville, Alabama,  Ben and I sit down to catch up. We discuss how his riding is going, how he has prepared for the Worlds, his hopes for the races and a how he and his team mates relax as they gear up for an event of this kind.  To follow Ben and the rest of the Para-cycling Worlds the event schedule and details of how to watch the races are at https://usacycling.org/article/how-to-watch-the-2026-uci-paracycling-road-world-championships.  We wish Ben and we everyone involved the best and hope he manages to find a decent coffee when he needs it!!

  3. Aug 28

    The role of patient voice in informing government treatment funding decisions - The live case of funding a new CIDP treatment in Australia

    Patient Voice matters!!  This is always true, but especially when governments are considering whether to fund new treatments.   With the Australian Government considering whether to fund a new CIDP treatment later this year. Nicole Tait and I take a look at the process the Pharmaceutical Benefits Advisory Committee are following, with special regard to how those affected by CIDP can share their experiences and input to the process.  This is a deliberately focused episode aimed at explaining why submissions are important and where you can go for help to make one.  Deadline for submissions is 16 September so time is of the essence.   For more information you can go reach out to GBS/CIDP Support Australia via the contact button on their website (https://gbscidpsupport.org.au/) or by emailing enquires@gbscidpsupport.org.au.  The submission website is at https://ohta-consultations.health.gov.au/ohta/pbac-november-2026/

  4. Aug 24

    Pushing the Boundaries of MMN Research - Dr Nicolas Dubuisson

    Conversation with Dr Nicolas Dubuisson (University of Oxford) about his cutting edge research into the cause of Multifocal Motor Neuropathy and his hopes to also conduct research that enables a biomarker to be found that helps better identify where MMN is present and measure its impact. Nicolas is a member of the University of Oxford team led by Dr Simon Rinaldi at the forefront of MMN research and a number of similar conditions. He is lead author of a recent Brain paper that documents current understanding of the condition and highlights gaps in understanding that need to be addressed.  Paper is at https://academic.oup.com/brain/advance-article/doi/10.1093/brain/awag260/8746611

  5. Aug 16

    Miles Washburn - Gearing up for Miles for GBS

    In this episode I catch up with Mile Washburn who i first talked to earlier this year ahead of his epic "Miles for GBS" Challenge on 24 August.  Miles was diagnosed with Guillain Barre Syndrome (GBS) in 2025 and after a short period of hospitalisation made an incredible recovery, albeit one that has left him living with a number of residual issues like chronic fatigue, anxiety and nerve pain.  A lifelong cyclist, Miles has thrown himself into "Miles For GBS" a project that will see him attempt to ride Mont Ventoux on 24 August to raise awareness of GBS and funds for the GBS Support Fund run by the GBS|CIDP Foundation International.  In this episode, Miles reflects on his preparation for this epic challenge and on what it will take to make to get him and his team mates to the top of this iconic mountain. An inspirational conversation with an inspirational man with lessons for everyone living with rare disease who wants to Make the Most of Now....  For more on Miles for GBS and to support the cause go to https://go.gbs-cidp.org/gbs26 and follow Miles on Facebook at https://www.facebook.com/61580596542484 Previous conversation with Miles is at https://www.buzzsprout.com/2128106/episodes/18568590

  6. Jul 8

    Nicole Tait - The Nuts and Bolts of Rare Disease - IVIG and SCIG

    Special episode exploring our experiences with the two different ways that immunoglobulin treatment is delivered. As patients with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Multifocal Motor Neuropathy, Nicole and I both rely on regular infusions of Immunoglobulin to treat our conditions. We both started receiving the treatment intravenously but have subsequently switched to subcutaneous infusion.  What have we found? What prompted the switch?  How do we feel about the treatment now? We delve into these questions and many more... Nicole is part of the incredible team at GBS/CIDP Support Australia who support patients with GBS, CIDP, MMN and related conditions across Australia.  To learn more about their work go to https://gbscidpsupport.org.au/

  7. May 27

    The Road to LA28 - Paralympics Series with Ben Watson - #1 - Introduction & the year so far

    What does it take to get to the Paralympics? What does it take to win a medal?  Those are the questions we hope to answer over the next couple of years in our Road to LA28 series with British Paralympian Ben Watson. In the first of the episodes, we catch up with Ben and delve into where he is at 2 ½ years before LA28! Answering questions like: Where is Ben at after the recent World Cup races? What’s he doing riding Unbound and how is he preparing for the unofficial gravel worlds and the longest race he has ever ridden? What’s is Ben doing to optimise his movement and position on the bike  What’s the process of qualifying for the Paralympics? What has Ben learned over the last few months of training and racing?  How does Ben balance training and focus with having fun? For more about Ben check out our earlier podcast at  https://www.buzzsprout.com/2128106/episodes/17633349 You can find Ben's Tokyo Road Race victory at https://www.youtube.com/live/-_7eLS8gMoQ?si=hfTJ-2cFGXF5-kcY  For more on Unbound Gravel, to find out about Live Streaming of the race and to see how Ben gets on go to https://www.unboundgravel.com/.

    The Road to LA28 - Paralympics Series with Ben Watson - #1 - Introduction & the year so far

  8. May 17

    Rob Long - Uplifting Athletes and the Rare Disease Community

    Remarkable, inspirational, humbling are just a few of the words that can be used to describe Rob Longs journey from the verge of the NFL draft to his role as CEO of Uplifting Athletes via an 18 month battle with a rare form of brain cancer…  In the latest episode of our podcast Clive chats with Rob about this remarkable journey and the incredible work that he and Uplifting Athletes do to support the rare disease community, catalyse research, support early career scientists and develop the leadership skills of young athletes.   Robs story and the work he and his team do truly is inspirational.   To learn more about Uplifting Athletes go to https://www.upliftingathletes.org/

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Ratings & Reviews

4.7
out of 5
3 Ratings

About

The podcast brings together the Multifocal Motor Neuropathy community to discuss this rare neurological condition and related ones. We talk to medical experts, patients and their supporters in the hope of informing and inspiring.

Information

  • Creator
    Clive Phillips
  • Years Active
    2023 - 2026
  • Episodes
    35
  • Rating
    Explicit
  • Copyright
    © 2026 Making the Most of Now
  • Show Website
    Making the Most of Now