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!!

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/61580596542484Previous 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/17633349You 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  

In the latest episode of our podcast, I chat to Claire Bergstrom Johnson. A research scientist at the University of Oxford, Claire Bergstrom Johnson is making meaningful discoveries that are transforming how patients with a rare, often fatal autoimmune neuropathy are diagnosed and managed.After seeing her twin sister battle CIDP from the age of 7, Claire’s unrelenting desire to ensure others don’t have to go through what her sister did, shapes everything she does. From her commitment to research, to her approach to communicating her discoveries and encouraging scientific collaboration. Claire is a true leader and innovator in her field.Not content with driving innovation in her chosen field, Claire has channelled her entrepreneurial spirit into the Oxbridge Admissions Club. Helping support people to successfully be accepted and secure funding to study at Oxford and Cambridge Universities. Claire is making a true dent in the universe when it comes to increasing the diversity of people attending those universities. Claire is driven to make a difference in the world. She is truly inspiring and one to watch as she continues her research, thanks to funding from Inflammatory Neuropathies UK and the award of the Benson Fellowship by the GBS|CIDP Foundation International. If theres one key take away from this conversation it's that to further our understanding and learn failure is not just an option, it's a necessity. Wise words indeed!! 

John Navarro is remarkable in many ways. First affected by MMN about 8 years earlier, John was diagnosed with MMN in 2024. His journey to diagnosis was by no means easy. After first experiencing symptoms in his toes, they gradually affected more of his leg function before also affecting his arms and hands. By the time he couldn’t ignore his symptoms, John had both foot and wrist drop. Living in Gibraltar, John travelled across the border to Spain to seek help. It was only through his perseverance and willingness to advocate for himself that he got the second opinion required to obtain his diagnosis. This saved him from unnecessary surgery after initial nerve conduction studies found nothing wrong.  Since being treated with IVIG, Johns arm and hand function has improved, but his legs remain immune to the positive effects of the treatment. Despite his ongoing physical challenges, John has thrown himself into raising  awareness of the condition and connecting those affected by it. This includes establishing a Facebook Group for members of the MMN community in UK. As the only person from his country with MMN, John has become a beacon of hope for many in his community living with rare diseases.  In this conversation, we touch on John's journey from initial symptoms through to his remarkable work in the MMN community. 

Ben Watson MBE is a full time Para athlete, double paralympic champion and Ambassador for Inflammatory Neuropathies UK.  Diagnosed with Guillain Barre Syndrome aged 14.  Almost overnight Ben went from being incredibly active to being confined to a hospital bed. After a recovery that took many months, he was left with permanent disabilities affecting his lower limbs and arms. However undeterred, he returned to normal life and continued to stay active, taking up cycle racing as he could no longer run easily. In 2016 Ben was out riding when he was approached by a member of the British Paralympic team who wondered if he was interested in undertaking some testing. Highly competitive, he jumped at the chance and soon found himself a member of Team GB.   5 years later Ben was on the start line at the Tokyo Paralympics.  Hoping for a medal, Ben achieved this and far more, taking home two golds in the C1-C3 cycling road race and time trial events.  Still competing,  Ben raced at the Paris Paralympics last year and after spending time with the Making the Most of Now team on the Tour de MMN in June is now gearing up for the World Championships later this year. He hopes LA 2028 will be his final paralympic swansong. In this conversation, we touch on Ben's journey from initial symptoms through diagnosis  treatment and recovery all the way to the lessons he has learned from racing at the highest level. Touching throughout on what kept him going during his illness and what motivates him now. Ben’s story is truly remarkable. He is one of the most incredibly positive people I have ever met and truly is an inspiration. 

Adapting to and thriving in adversity and so much more.. In 2020, Australian swimming legend and two time Olympic gold medal winner Michael Klim was diagnosed with the Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). After 2 years coming to terms with this life changing diagnosis, Michael made his diagnosis with this rare disease public. He has since become an active advocate for the CIDP community and as a Lifeblood Ambassador has highlighted the importance of plasma donation in treating this and many other inflammatory neuropathies. In this candid conversation, Michael opens up about the challenges of coming to terms with his diagnosis and how his experiences have driven him to establish the Klim Foundation to help others in the same position. The Klim Foundation aims to raise awareness of CIDP, provide vital support for sufferers and families affected by it, and to drive research to find a therapeutic solution for this rare and debilitating neurological disorder. To learn more about Lifeblood Australia go to https://www.lifeblood.com.au/michael-klim To learn more about the Klim Foundation go to https://klimfoundation.org.au/

In this episode I talk to Dr Jeff Allen, one of the worlds leading experts in the field of inflammatory neuropathies and head of the GBS|CIDP Foundation International Global Medical Advisory Board. In our conversation we delve into research being done to better understand what causes MMN and to develop alternative treatments to Intravenous Immunoglobulin (IVIG).  It's truly an exciting time to be in the MMN community as there are a number of possible treatments being trialed at the moment and we are learning more about the condition each and every day. 

With February approaching I sat down to chat to Maddy Miller, Kaitlyn Ide and Meg Mains of the GBS|CIDP Foundation International about Multifocal Motor Neuropathy Awareness Month. What ensued was a great conversation about the many events during the month that will bring those affected by MMN together and support greater understanding of the condition.  We also discussed Miles for MMN and how you can get involved and help raise funds for MMN research.  For more information about MMN Awareness Month go to https://www.gbs-cidp.org/2025/01/mmn-awareness-month-2025/ #multifocalmotorneuropathy#raredisease

Dr Gareth Parry joins me to discuss the small study we are doing to try to understand how my MMN is affected by my preparation for the Tour de MMN 2025. In our conversation Gareth provides an overview of MMN symptoms, diagnosis and treatment before we delve into how I am using daily muscle strength measurements to better understand how treatment with IVIG and exercise affects my symptoms. 

A true deep dive into MMN with Dr Jeff Allen, one of the worlds leading experts in the field of inflammatory neuropathies and head of the GBS|CIDP Foundation International Global Medical Advisory Board. Jeff is lead author of a recently published paper on diagnosing and treating MMN that can be found at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819864/.In this conversation we discuss the latest guidelines for diagnosis and treatment of MMN and a range of exciting MMN research developments. It is truly a  comprehensive examination of what we know and what we don't yet know about Multifocal Motor Neuropathy. 

Edward Gent joins me to discuss his recent foray into marathon running as part of the Ride for MMN and MMN Awareness Month. Edward had never attempted anything like this before his diagnosis with MMN, so it was a real step into the unknown. A slightly wobbly one at that given how the condition affects him.Founder of Health Haven an app that helps connect people to personal trainers, nutrition advisors and other experts to help them achieve their exercise goals, Edward was well placed to find a coach to work with for the event. In our conversation we delve into what made Edwards partnership with his coach so successful and why finding the right coach is so important. It's not a one size fits all exercise for sure. We also found out how he got on tackling the 26 miles 385 yards he set himself to run!For information on Health Haven go to https://healthhavenapp.com/

In this episode I chat with Lynn Rogers about her life with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Lynn is a research scientist who in 2017 found herself experiencing pain and loss of movement that saw her being admitted to hospital 10 days after her first symptoms with significant loss of lower limb movement. Instead of being on the start line of the Ironman Canada event she had been training for, Lynn found herself starting a long, often tortuous diagnosis and treatment journey. Over many years, Lynn has tried it all when it comes to CIDP treatments, as she and her doctors have searched for answers. She even found herself becoming a patient at the rehab centre she worked in. Undaunted by the challenges faced in trying to find an accurate diagnosis and a treatment that helped manage her symptoms the best, Lynn has continued to train for and enter Ironman events and to raise money for the GBS|CIDP Foundation International through her athletic endeavours.Most recently she entered the Lake Placid Ironman in 2023, the story of which is documented in the film Inches to Miles from Athletic Brewing Company. I won't give away how she got on, but needless to say its remarkable that Lynn made the start line, let alone that she competed so hard once in the race. True testament to what can be achieved with a positive mindset and a great team around you.The film can be found at https://youtu.be/MpjdqtYgDxM?si=BGUKlYaSZA0m7RAN it really is well worth a watch. 

In this episode recorded at the start of GBS|CIDP Awareness Month I chat to Rich Collins CEO at GAIN Charity in the UK. GAIN stands for Guillain-Barré Syndrome & Associated Inflammatory Neuropathies. It is the only charity dedicated to supporting the GBS, CIDP and MMN community in the UK and Republic of Ireland. Rich joined GAIN at the start of the year and has wasted no time getting to know the community. In this conversation we touch on everything from the challenge of trying to be heard as a small charity and community through to the importance of long term support for those affected by both acute and chronic conditions. Somehow we also manage to weave in discussions about why supporting a football team is like being part of a rare disease community and why we would both love to see a soap opera storyline featuring rare diseases. Rich and the team at GAIN are looking to grow their reach and impact.  To learn more go to https://gaincharity.org.uk/ and please get in touch with Rich and the team by email at  [email protected], on the phone on freephone 0800 374803 in the UK and 1800 806152 in Ireland. They would love to hear from you. 

In this episode of the podcast I chat to Nancy Di Salvo Director of International Affairs at the GBS|CIDP Foundation International. A truly remarkable woman Nancy has has lived through two bouts of Guillain Barre Syndrome (GBS) and with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). In our chat she discusses with me her experience of these conditions and how she has overcome the challenges they have posed, to become an incredible rare disease advocate and support to others affected by the conditions. 

What can those with autoimmune condition do to help manage their condition beyond the treatment prescribed by their doctor? What diet should i be on if i have an autoimmune condition?Common questions that pop up in the MMN community. So I thought it was time to ask an expert. in this episode I chat to Kate Costello about her work as a nutritionist to try to "avoid the complicator" and get the heart of the basics of nutrition. Kate has some simple practical tips we can all try to follow and advice for those who want to go further and get more specific, tailored advice. To learn more about Kate go to https://www.kate-costello.com/

To coincide with MMN Awareness month my first conversation this year is with Anita Brikman, President and CEO of the Plasma Protein Therapeutics Association (PPTA)  A former TV presenter, Anita has dedicated much of her career to educating and empowering people about healthcare matters. Since leaving the bright lights of the TV studio a decade ago she has forged a leadership career in the healthcare sector. In mid 2023 she joined the PPTA, a global trade organisation representing more than 1100 human plasma collection centres as well as the manufacturers of lifesaving plasma protein therapies.Anita and I chat about a range of topics from the challenges of synthesising important healthcare information into a newsworthy slot on the nightly news, to an in depth discussion about plasma, its uses and the supply challenges PPTA is working to address.  If you want to learn more about the “liquid gold” used to treat a huge range of conditions including MMN then this episode is for you.

In this episode I chat to James Coxon about his remarkable journey with MMN which has seen him become a world record holding cyclist since he was forced by the condition to take early retirement from his career as a dentist.  From the stress and uncertainty of not know what was causing him to loose shoulder and upper arm strength to riding his recumbent trike in World Championships and winning. This is a truly remarkable story of Making the Most of Now.To learn more about James you can read his blog at https://onegoodarmtriker.wordpress.com/.  To see footage from his 100km record winning ride at Newport Velodrome go to https://www.youtube.com/watch?v=7TLetCC14qc.

In this episode I chat to Pam Stoikopoulos, Founder and CEO of Big Eye Innovation and member of the Board of GBS|CIDP Foundation Canada. Pam was diagnosed with Multifocal Motor Neuropathy in 2017. In our conversation we discuss her diagnostic journey, her career in the healthcare sector and her passion for putting the patient at the heart of innovation in healthcare advocacy work. A passion that each and every day influences her work with Big Eye Innovation which she founded in 2021. To learn more about Big Eye Innovation go to https://www.bigeyeinnovation.com/.To learn more about the GBS|CIDP Foundation Canada go to https://www.gbscidp.ca/.

In this episode I chat to Chris Willard. In late 2022 Chris was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) an autoimmune disorder in which the body's immune system attacks the myelin that insulates and protects your body's nerves. Since his diagnosis, Chris has been on an incredible journey as he has adapted to life with the condition and learnt more about it. in less than 12 months he has written two books about the importance of functional fitness and nutrition in managing his condition and has established a global community for those whose lives are touched by rare disease.  Chris and I chat about his remarkable journey from first symptoms to the amazing work he is doing now and explore how he has had to respond differently to life with CIDP compared to previous medical challenges. To learn more about the Advocate Voice go to https://www.youtube.com/channel/UC8IY9tZTxIiE1703HQoERTA  or https://www.instagram.com/theadvocatevoice/

Fascinating conversation with Richard Sperry who has been living with MMN since. Initially diagnosed with ALS, Richard chats about his diagnostic journey, the impact it has had on both him and his family, and much much more.Among a range of different aspects of his journey and life with MMN, Richard discusses the help his family received from Hope Loves Company. A Not for Profit supporting children and young adults who have or had a loved one battling ALS, Richard has maintained his relationship with the organisation and is now a Board member as well as an active member of the MMN community. Ohh and yes we talk 80's rock bands because.... well, because we can! 

In this episode I catch up with Claire Schulz Bergman to discuss her recent ALS fundraising challenge which saw her tackle a 380 mile bike ride and raise $40,000 in the process. A truly remarkable effort.  

Conversation with Chelsey Fix , Associate Director of Research and Advocacy at the GBS|CIDP Foundation International.  We discuss her work, how it fits into the wider work of the Foundation, and why she cares so much about putting the patient at the heart of her work. We also touch on some of the key advocacy priorities in the USA and across the globe that relate to the Multifocal Motor Neuropathy community. If you are interested in learning more and/or getting involved in the advocacy work the Foundation does, Chelsey would love to hear from you. You can get in touch via their website https://www.gbs-cidp.org/ or can contact her directly at [email protected]. 

A conversation with Claire Schulz Bergman who after an initial MMN diagnosis was diagnosed late last year with ALS. In our chat Claire talks about her response to receiving a terminal diagnosis and about the amazing work she is doing to raise funds for ALS research To learn more about her campaign go to https://donate.mn.als.org/team/495344

Conversation with New Zealand based Englishman David Savage who recently completed an epic 16 day self supported bike packing ride exploring his limits and raising funds for MMN research. 

In this episode I chat to Brenda Perales, MMN patient, advocate and member of the Board of the GBS/CIDP Foundation International. A truly inspiring woman, in a candid conversation Brenda shares the ups and downs of her MMN story and talks about the incredible work she does to support others in the Multifocal Motor Neuropathy  community each and every day. To learn more about the GBS/CIDP Foundation Symposium in October go to  https://www.gbs-cidp.org/2023symposium/

Conversation with Edward Gent who was diagnosed with Multifocal Motor Neuropathy in 2018 about his diagnosis, life with MMN and his recent #rideformmn fundraising challenge. 

In the first episode of the podcast I chat to the neurologist Dr Gareth Parry. Gareth is the man who first described MMN in the early 80's. A global expert and member of the GBS/CIDP Foundation's Global Advisory Board  Dr Parry is a font of knowledge when it comes to Multifocal Motor Neuropathy and related conditions. In this conversation we discuss everything from diagnosis to treatment and everything in between.