Making the Most of Now

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.