Making the Most of Now

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 [email protected]

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!!

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 [email protected]. 

The submission website is at https://ohta-consultations.health.gov.au/ohta/pbac-november-2026/ 

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

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

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/

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/.

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/

“It’s all about the patient”

In this episode, I talk to Miles Washburn about his GBS experience, the Miles for GBS challenge and about the motivation behind it.

Early in 2025, Miles Washburn was struck down by Guillan Barre Syndrome. Only a couple of days after feeling the first symptoms, he was unable to walk or swallow properly and was fearing the worst.

Thanks to treatment with Immunoglobulin and the care of the health care professional, family and friends who supported him, Miles made a remarkable recovery. Only weeks later he was back at home with comparatively normal muscle function, though he continues to experience nerve pain, fatigue and anxiety associated with the condition 

Humbled by his experience and recognising that not everyone is able to afford the things they need to adapt to life with GBS. Miles has thrown himself into a project to raise awareness of GBS and funds for the GBS Support Fund run by the GBS|CIDP Foundation International.  A challenge that for Miles is “all about the patient”.

A competitive cyclist in his youth, who once had the Olympics in his sight, Miles has turned to the bike again to help him in his quest to help others affected by GBS. 

Supported by his wife and his old coach. On 24 August, Miles will attempt to ride the famed climb of Mont Ventoux in Provence. The so-called Giant of Provence, this is one of cycling’s truly great mountains. Riding it will take all the grit that Miles has displayed during his GBS journey. 

Miles is a remarkable man and this conversation was humbling and inspiring in equal measure. I hope you enjoy it. 

To find out more go to https://go.gbs-cidp.org/gbs26

What has enabled recent developments in understanding of the mechanisms that cause MMN?

Why have these developments been important in the development of new possible treatments currently being trialled?

What’s involved in clinical trials and what do possible participants need to think about when considering getting involved?

What are some of the challenges of getting drugs to market once they have been successfully trialled? 

Just some of the questions addressed in the latest episode of our podcast with Dr Ludo van der Pol, Professor of Neurology, Utrecht Medical Centre.

At a time when two companies (Dianthus and Argenx) are looking for patients to participants in trials of possible MMN treatments. This episode is one to listen to if you want to understand the drug trial process better.

For more information on these active trials go to https://clinicaltrials.gov/ and search for #MultifocalMotorNeuropathy