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

The Road to LA28 – Paralympics Series with Ben Watson – #2 – Gearing up for the Worlds – Making the Most of Now

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!!
  1. The Road to LA28 – Paralympics Series with Ben Watson – #2 – Gearing up for the Worlds
  2. The role of patient voice in informing government treatment funding decisions – The live case of funding a new CIDP treatment in Australia
  3. Pushing the Boundaries of MMN Research – Dr Nicolas Dubuisson
  4. Miles Washburn – Gearing up for Miles for GBS
  5. Nicole Tait – The Nuts and Bolts of Rare Disease – IVIG and SCIG

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

The Road to LA28 – Paralympics Series with Ben Watson – #2 – Gearing up for the Worlds – Making the Most of Now

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!!

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