//podcastplus.net/feed/podcast~c3f56829ea8276830d02f444aa2b3ef77bc089fa67a208b4b6ccfc08a5add39d The podcast brings together the Multifocal Motor Neuropathy community to discuss this rare neurological condition and related ones. We talk to medical experts, patients and their supporters in the hope of informing and inspiring. Mon, 24 Aug 2026 22:16:21 +0000 https://www.buzzsprout.com/2128106/episodes/17633349-ben-watson-from-guillain-barre-syndrome-to-paralympic-gold-an-incredible-journey.mp3 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 Paral... Fri, 08 Aug 2025 04:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/17633349-ben-watson-from-guillain-barre-syndrome-to-paralympic-gold-an-incredible-journey.mp3 https://www.buzzsprout.com/2128106/episodes/17505301-michael-klim-from-olympic-champion-to-rare-disease-champion-an-aussie-swimming-legend-on-life-with-cidp.mp3 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... Thu, 24 Jul 2025 22:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/17505301-michael-klim-from-olympic-champion-to-rare-disease-champion-an-aussie-swimming-legend-on-life-with-cidp.mp3 https://www.buzzsprout.com/2128106/episodes/17155993-dr-jeff-allen-the-latest-in-mmn-research-and-drug-trials.mp3 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.   Wed, 14 May 2025 02:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/17155993-dr-jeff-allen-the-latest-in-mmn-research-and-drug-trials.mp3 https://www.buzzsprout.com/2128106/episodes/16551654-all-about-mmn-awareness-month-2025.mp3 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 Mon, 03 Feb 2025 07:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/16551654-all-about-mmn-awareness-month-2025.mp3 https://www.buzzsprout.com/2128106/episodes/16508334-dr-gareth-parry-getting-a-grip-understanding-better-how-mmn-affects-you.mp3 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.  Mon, 27 Jan 2025 03:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/16508334-dr-gareth-parry-getting-a-grip-understanding-better-how-mmn-affects-you.mp3 https://www.buzzsprout.com/2128106/episodes/15626967-dr-jeff-allen-a-deep-dive-into-mmn.mp3 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.   Thu, 22 Aug 2024 23:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/15626967-dr-jeff-allen-a-deep-dive-into-mmn.mp3 https://www.buzzsprout.com/2128106/episodes/15504999-edward-gent-tackling-a-marathon-when-you-have-mmn-why-it-s-a-team-sport.mp3 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/ Tue, 30 Jul 2024 22:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/15504999-edward-gent-tackling-a-marathon-when-you-have-mmn-why-it-s-a-team-sport.mp3 https://www.buzzsprout.com/2128106/episodes/15412535-lynn-rogers-research-scientist-and-triathlete-on-life-with-cidp.mp3 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 entere... Sun, 14 Jul 2024 22:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/15412535-lynn-rogers-research-scientist-and-triathlete-on-life-with-cidp.mp3 https://www.buzzsprout.com/2128106/episodes/15167966-rich-collins-bringing-new-energy-to-gbs-cidp-and-mmn-in-the-uk.mp3 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... Fri, 31 May 2024 02:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/15167966-rich-collins-bringing-new-energy-to-gbs-cidp-and-mmn-in-the-uk.mp3 https://www.buzzsprout.com/2128106/episodes/14987960-nancy-di-salvo-connector-across-continents.mp3 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.  Wed, 01 May 2024 02:00:00 +0000 https://www.buzzsprout.com/2128106/episodes/14987960-nancy-di-salvo-connector-across-continents.mp3