Making the Most of Now

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 subc...

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...

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 t...

“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 a...

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...

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...

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...

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, h...

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 C...

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...

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...

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 la...

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 ad...

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 h...

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...

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 challen...

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...

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 healthc...

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. T...

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...

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 i...

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 childr...

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...