Making The Most of Now

Incredible day out on the roads of Flanders with argenx Staff from around the world took part to wish the #tourdemmn2025 team well ahead of our big ride in May. With guides and support from Flamme Rouge we had a great ride that showcased the type of roads the professionals are racing on in the spring classics. Nothing beats spinning along at 25kph chatting as a means to connect with others while indulging a passion and keeping fit. Thus the ride provided a truly wonderful chance to meet the staff and to learn more about the work being done to develop treatment for a range of rare auto immune conditions including MMN. It’s far to say you would have to go a long way to find a more passionate, committed purpose driven group of people. Can’t thank argenx enough for the support they are giving the #tourdemmn2025 and for everything they do. Special thanks to Kathy Perez, Dieter Defever, Ben Petok and Kate Dion for making the ride happen and creating the opportunities for me to talk to several journalists about MMN. Fingers crossed that will lead to greater awareness of this chronic #raredisease #multifocalmotorneuropathy #togetherwediscover

Day two at the National Cycling Show. The Get a Grip challenge proved a wonderful way to engage people about MMN and have some fun?? Participants ranged from 4 years upwards and included the Lion of Flanders, Johan Museeuw former Tour de France yellow jersey wearer who gave the team great advice regarding the #tourdemmn2025 Jesse Yates also gave is his thoughts on the challenges we will face during the Tour and gave us an insight into what his dad Sean a legendary British rider and the third ever Brit to wear the yellow jersey would advise us.. Finally it was wonderful to have Chris and Rich from Guillain-Barre & Associated Inflammatory Neuropathies join us on the stand alongside the Tour team. #tourdemmn2025 is supported by argenx and is raising funds for the GBS|CIDP Foundation International #multifocalmotorneuropathy research fund ?? Thanks to Steve Shirley , Rufus McNeil , Frank Culverwell and Ann Braithwaite for making the stand such a success and to Matthew Jenke for capturing the action.. plus Jon Ager CBE ChPP for the inspiration behind the Get a Grip challenge.. fantastic work everyone

Incredible day at the National Cycling Show Wonderful having so many people join us, learn about our work and participate in the Get a Grip Challenge Fantastic to meet both Olympic gold medallist Ed Clancy and Paralympic gold medalist Ben Watson.. so grateful to them for taking the time to chat Really looking forward to riding with Ben during the #tourdemmn2025 Really looking forward to day 2. Come see us and find out if you can top our leaderboard???? #tourdemmn2025 is supported by argenx and is raising funds for the GBS|CIDP Foundation International MMN research fund Thanks to Ann Braithwaite,Rufus McNeil ,Steve Shirley and Frank Culverwell for their amazing help and Matthew Jenke for capturing the moment.

Wonderful to have opportunity with Silver Eye Films and Find Your Feet Films to interview Bernard Pusey about his experiences of cycling in the 50’s and the 1955 Tour de France A true pioneer, Bernard is Britains oldest living Tour de France rider and the last remaining member of the 55 Tour team. His stories are a massive inspiration for us as we prepare for the #tourdemmn2025 Tour de MMN is supported by argenx and is raising funds for the GBS|CIDP Foundation International MMN research fund #multifocalmotorneuropathy #raredisease

BA big part of preparing for the #tourdemmn2025 is ensuring we have the right bike setup. That’s where Dave Walker of Leadout Cycles comes in. Not just our road captain, Dave is helping the team with bike fitting and equipment support. Great to spend a day with him refining the bike fit for Clive Phillips and getting some new wheels Dave has built especially for the Tour fitted.. Dave is incredible at what he does, it’s amazing to have his support.. Also great to have Matthew Jenke of Silvereye Films us to capture the day for our documentary.. #tourdemmn2025 is supported by argenx and raising funds for GBS|CIDP Foundation International MMN research fund #multifocalmotorneuropathy #rideformmn #TogetherWeDiscover

Every day is a school day???? Wonderful skills session with Tony Ireland MBE from Pedalcraft as part of our #TourdeMMN2025 training camp. Working on our individual and group skills was invaluable as we work towards our big ride in May. However experienced all the riders learned something new and left with skills to work on.. Thanks Tony for a wonderfully structured session, to Nathan at Abingdon Race Team for the help securing us a venue and Dave Walker of Leadout Cycles Ltd for being a great demo rider and great team mate. #rideformmn Riding to raise funds for GBS-CIDP Foundation International #multifocalmotorneuropathy research fund #tourdemmn supported by argenxglobal

Tour de MMN 2025 Training Camp -Day One Great day out with Frank Culverwell and Steve Shirley in the Chilterns First day in our awesome Tineli #TourdeMMN kit. Huge thanks to argenx, Leadout Cycles and Vedette Consulting for all their support and to 7 Transport Regiment RLC for the loan of a bike for Frank???? #rideformmn #multifocalmotorneuropathy

Not long now!!! We are gearing up for the National Cycling Show at the NEC in Birmingham, 22-23 March 2025. Come along and find out more about what we do and next year’s epic challenge, the #TourdeMMN 2025. Meet the team – riders, film crew and support crew and take part in our Get a Grip Challenge. To get free tickets, go to https://lnkd.in/dkBhBriJ and use the code MMN. Tickets give you access to the exhibits, and talks from inspiring speakers like cycling great Dame Laura Kenny. You’ll also be able to visit the National Outdoor Expo (https://lnkd.in/d5aG6WE) taking place in an adjacent hall. See you there! #CyclingShow #TourdeMMN supported by argenx Riding with #multifocalmotorneuropathy #rideformmn #raredisease #TogetherWeDiscover #getagrip Supporting GBS|CIDP Foundation International MMN Research Fund Rufus McNeil, Steve Shirley,Matthew Jenke,Ann Braithwaite,Dave Walker

This week Clive took a short break from Tour de MMN planning for his regular 6 monthly check up with my neurologist.. It came with a twist though.. Matthew Jenke recording the session for our Tour de MMN documentary. Along with a regular check of his #multifocalmotorneuropathy symptoms the appointment involved a deep dive into how to best manage Clive’s condition during the tour and what we might do should it deteriorate badly with the extra load… Big double dose of IVIG on the horizon before the ride?? Thanks to all the #plasma donors who make IVIG treatment possible ?? it’s a game changer #rideformmn #tourdemmn supported by argenx Raising funds for GBS|CIDP Foundation International MMN research fund

Incredible week of #tourdemmn2025 training in Akaroa for Jon Ager CBE ChPP and Clive Phillips this week. In 6 rides they have clocked up 379km and climbed nearly 8000m ?? That’s a decent start to Miles for MMN this #multifocalmotorneuropathy awareness month!! The #tourdemmn2025 this May will see Jon, Clive, Steve Shirley, Dave Walker and Frank Culverwell ride 3200km in the wheel tracks of the first British Tour de France team that rode the tour in 1955. The #tourdemmn2025 is supported by argenx and is raising funds for the GBS|CIDP Foundation International #MMN research fund. Watch this space for updates as the team prepare for this epic adventure! #raredisease #multifocalmotorneuropathy #togetherwediscover