Clive Phillips - Making the Most of Now

Amplifying Patient Voices to Transform Rare Disease Care - Improving Understanding of Multifocal Motor Neuropathy
#RideforMMN

[PA Real Life @PA_Real_Life]

An ex-soldier who was diagnosed with a rare, incurable condition after he could not give a thumbs up to a colleague has said he now has the hand grip strength of a 90-year-old

✍️: @elfinwood44
https://t.co/tBVlRQFumH

[Clive Phillips - Making the Most of Now @makemostnow]

What does the @gbscidp MMN Research Fund support?

At @NDCNOxford we got to find out, when they showed us their work to understand what causes #MMN.

They are learning much, though more research is needed.

To support MMN research go to https://t.co/2myJw9znhd

#tourdemmn2025

[Clive Phillips - Making the Most of Now @makemostnow]

Preparing for the Tour de MMN 2025 isn't all about the bike.

Strength training is a big part of getting ready for the challenge

This week @silvereyefilms captured Clives session with Dan at Inner Strength in Richmond.

#tourdemmn2025 is supported by @argenxglobal

[Clive Phillips - Making the Most of Now @makemostnow]

Wonderful skills session with Tony from Pedalcraft as part of our #TourdeMMN2025 training camp.

Working on our skills was invaluable as we work towards our big ride in May.

Raising funds for @gbscidp #multifocalmotorneuropathy research
#tourdemmn supported by @argenxglobal

[Clive Phillips - Making the Most of Now @makemostnow]

Final ride before a Tour de MMN training camp in the UK.

looking forward to meeting up with the rest of the team, to exhibiting at the @NatCyclingShow & meeting with @gaincharity & @argenxglobal

Hope to meet lots of the GBS, CIDP & MMN community on our travels

#rideformmn

[Clive Phillips - Making the Most of Now @makemostnow]

Really looking forward to being in Brum for the National Cycling Show in a couple of weeks.

To get free tickets, go to https://t.co/dr6ezvsQX7 and use the code MMN.
Hope to see you there📷

[Clive Phillips - Making the Most of Now @makemostnow]

Mid training ride update
😀 #tourdemmn supported by @argenxglobal #TogetherWeDiscover
#rideformmn,
riding with #multifocalmotorneuropathy
supporting @gbscidp MMN research fund.

[Clive Phillips - Making the Most of Now @makemostnow]

Connecting with Rich and Chris from @gaincharity this morning😀

Great to discuss collaborating during MMN Awareness Month next Feb and later at the National Cycling Show and the #TourDeMMN supported by @argenxglobal .

Watch this space!

#multifocalmotorneuropathy

[Clive Phillips - Making the Most of Now @makemostnow]

We are exhibiting at the National Cycling Show in Birmingham, 22-23 March 2025.
Learn about the epic #TourdeMMN 2025 and take part in our unique Get a Grip Challenge.
For free tickets, go to https://t.co/dr6ezvsQX7 and use the code MAKINGTHEMOSTOFNOW before 30th November 2024.

[Clive Phillips - Making the Most of Now @makemostnow]

Great to see @NZBlood encouraging people to donate blood and #plasma.

Plasma derived products are essential to the treatment of many conditions including #multifocalmotorneuropathy. Want to make a difference then donating is a great way

[Clive Phillips - Making the Most of Now @makemostnow]

Tour de MMN 2025 aims to increase awareness of MMN, connect the MMN community and raise funds for the @gbscidp MMN research fund.

To help us achieve our goals we are excited that @argenxglobal are joining us as lead sponsor of the Tour de MMN.

#TogetherWeDiscover
#rideformmn

[Clive Phillips - Making the Most of Now @makemostnow]

IVIG day. Can’t say it’s fun but 5 hours of infusion and a couple of days feeling fatigued is a small price to pay every 6 weeks for working hands and legs…

#thanks to all the @NZBlood plasma donors who make my treatment for #multifocalmotorneuropathy possible 😀😀

[Clive Phillips - Making the Most of Now @makemostnow]

Great catching up with Matt from Silvereye Films to start putting the meat on the bones of the plan for filming the #tourdemmn2025.

Great to have Matt on board.

#rideformmn
Riding with #multifocalmotorneuropathy
#veterans riding to support the @gbscidp #MMN research fund

[Clive Phillips - Making the Most of Now @makemostnow]

First ride since arriving back in NZ. Nice to blow the cobwebs away😀 summer time riding 👍👍

#rideformmn
Riding with #multifocalmotorneuropathy

[Clive Phillips - Making the Most of Now @makemostnow]

Great to get an update from Dr Jeff Allen on research into GBS, CIDP and MMN during the @gbscidp board meeting.

It’s amazing to see the advancements in understanding being made and potential for new treatments that exists.

The update is online at https://t.co/qWJ2MgBVgs

[Clive Phillips - Making the Most of Now @makemostnow]

Great to share #tourdemmn2025 plans with the staff and board of the @gbscidp

Raising funds for the foundations MMN research fund and connecting with the communities it supports are at the heart of our ride..

#rideformmn
#multifocalmotorneuropathy

[Clive Phillips - Making the Most of Now @makemostnow]

Great to see these guys last week for our first #tourdemmn2025 team gathering. Excited to be riding in France with them next year..

#rideformmn riding with #multifocalmotorneuropathy

@leadoutcycles1

Supporting MMN research with @gbscidp

[Clive Phillips - Making the Most of Now @makemostnow]

Recce of the ride the #tourdemmn2025 team will tackle tomorrow. Included checking out filming and eating locations😀

Great day 😀😀
#rideformmn
Riding with #multifocalmotorneuropathy
supporting @gbscidpfoundation MMN research fund

[Clive Phillips - Making the Most of Now @makemostnow]

Bike fit in Cheshire with Dave from Leadout Cycles today. So grateful for Dave’s support as I gear up for the #tourdemmn2025.

Definitely feeling more comfortable on the new @RibbleCycles bike after the time with Dave

#multifocalmotorneuropathy
#rideformmn

[Clive Phillips - Making the Most of Now @makemostnow]

Great to meet up with @Rich_Collins of @gaincharity as part of #tourdemmn2025 planning.

Lots of ideas to connect with the UK #MMN community before, during and after the ride😀

# multifocalmotorneuropathy #raredisease #rideformmn