Podcast

The Making the Most of Now podcast brings together members of the rare disease community to discuss their lives and conditions. We chat to those living with rare disease and those supporting those them to further our knowledge and learn more about how people manage, adapt to and overcome life in the face of rare disease.

The podcast is available on all major podcast platforms and at https://makingthemostofnow.buzzsprout.com. You can also find short clips from it on our You Tube channel https://www.youtube.com/@makingthemostofnow3467

Latest Episodes

Steps Of Strength – Trekking the Kokoda Trail with GBS – Global GBS awareness campaign – 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-kokodaInterested in sponsoring the project contact us at clive@makingthemostofnow.co.nz 

1. Steps Of Strength – Trekking the Kokoda Trail with GBS – Global GBS awareness campaign 01:15:02
2. The Road to LA28 – Paralympics Series with Ben Watson – #2 – Gearing up for the Worlds 37:40
3. The role of patient voice in informing government treatment funding decisions – The live case of funding a new CIDP treatment in Australia 27:35
4. Pushing the Boundaries of MMN Research – Dr Nicolas Dubuisson 50:49
5. Miles Washburn – Gearing up for Miles for GBS 01:02:57

The Road to LA – Special Series featuring Paralympic Champion Ben Watson

What does it take to make it to the Paralympics? What does it take to win gold? That’s what we are going to explore with double Paralympic Champion Ben Watson, in this special series leading up to the Los Angeles 2028 Paralympics .

Ben is one of the many inspiring people we have had the privilege of getting to know since we started the podcast. A keen athlete from early childhood, Ben contracted Guillain Barre Syndrome aged 14. After being paralysed almost overnight, Ben gradually recovered but was left with significant loss of motor function and strength below his waist. Despite this he continued to enjoy riding a bike and following Rio 2016 was invited to join the British Para-cycling setup.

In a remarkable rise to the top of Para sport, only 4 years later Ben won double gold at the Tokyo Paralympics. After just missing the podium in Paris 3 years later, Ben is now on a mission to make the top step of the podium in LA.

After getting to know Ben during the Tour de MMN and seeing first hand what a remarkable athlete and ambassador for para sport and the rare disease community he is. We can’t wait to share his story over the coming months.

To learn more about Ben check out our first interview with him below

Ben Watson – From Guillain Barre Syndrome to Paralympic Gold – An Incredible Journey – Making the Most of Now