CMTUK

30/08/2026

Don’t forget our back-to-school catch up is tonight!

See you soon 😊

(Joining details in the comments)

18/08/2026

📣 Have your say on PIP
The government's Timms Review is running workshops this autumn to shape its recommendations on Personal Independence Payment (PIP), and it wants to hear from disabled people and people with long-term health conditions.

If you've had experience of the PIP process, this is a real chance to help shape what happens next. Workshops run across the UK in September and October, both in person and online.

⏰ Registration closes at 5pm on Friday 21 August, so please don't leave it too late.

Read the full guide and find the link to register 👇
https://www.cmt.org.uk/timms-review-pip-workshops-register-your-interest-by-21-august/

17/08/2026

🔔 Our Summer 2026 issue of ComMenT is landing in your inbox at 5pm today! 📩

This edition celebrates 40 years of CMTUK, turning knowledge into support since 1986.

Inside you'll find:
☑️ Highlights from our 40th Annual Conference and AGM in Reading
☑️ A warm welcome to Emma Lines, our first ever CMTUK Ambassador
☑️ A tribute to our founder, Ivor Dartnall-Smith
☑️ The results of Move a Mile-a-Day in May
☑️A spotlight on the Muscular Dystrophy Support Centre
☑️ Exercise resources from our Conference speaker Suni Narayan
☑️ Updates on the Timms Review of PIP and more

📌A little tip for when it arrives: keep an eye out for the QR codes throughout the issue. You can click or tap each one to head straight to our website, a linked article, or a YouTube video, including the exercise videos from Suni Narayan, one of our Conference speakers!

10/08/2026

Together, we are paving the way for the future of CMT research!
📖 Read the full article here: https://ecmtf.org/advancing-charcot-marie-tooth-research/
European CMT Federation

ECMTF highlights new guidelines for Charcot-Marie-Tooth clinical trials, emphasizing flexible designs and patient-centric endpoints to accelerate therapies.

In recent years, clinical trials for CMT have faced unique challenges, with some missing primary endpoints despite showing real therapeutic potential. Driven by a global coalition of patient advocacy groups, clinicians, and pharma partners, this new publication sets a clear standard to overcome these hurdles.

The goal? Implementing flexible trial designs, more accurate functional endpoints, and biomarker integration to accelerate the path to effective therapies. Patients and care partners are at the heart of this framework.

Together, we are paving the way for the future of CMT research. 💪 📖

Read our article here: https://ecmtf.org/advancing-charcot-marie-tooth-research/

06/08/2026

Last few places remaining for our 2026 CMT Kids Weekend 🔔

This action-packed residential weekend is a chance to try new accessible activities, meet others who understand life with CMT, challenge yourself, and create memories that will last a lifetime - plus, siblings are welcome too! 💙

📍 Bendrigg Trust, Lake District

📅 Friday 23rd October (from 4pm) to Monday 26th October (10am)

👥 11–17 year olds

💷 Thanks to our fundraising efforts, the weekend is heavily subsidised and costs a minimum donation of £100 per person

This includes:
✅ Three nights' accommodation
✅ All meals throughout the weekend
✅ All activities and instructors
✅ All equipment required

Whether you're returning for another year or thinking about joining us for the first time, we'd love to see you there!

Places are limited and allocated on a first-come, first-served basis, so check your emails, or drop us a message for your registration form 👀

We can't wait for another amazing CMT Kids Weekend! 🎉

31/07/2026

📣 Our Carers Support Group has a new name.

It is now the Family Carers Support Group. Nothing about the group itself is changing, we just felt the new name says it a little better.

This has always been a space for the partners, family members and friends who care for someone with CMT, and we know that word "carer" does not always feel like it fits.

You may be doing more than you realise, and there is support out there for you too!

Our next meeting takes place on 27th August at 7pm. Get in touch if you feel you might like to join us this time!

29/07/2026

⏳ There's still time to join us! We have places left on our 2026 CMT Kids and Big Kids Weekends!

None of this happens without you. Thanks to everyone who Moved a Mile-A-Day in May, we're able to run these weekends again this year, giving young people with CMT the chance to try new things, build confidence and meet others who just get it 🩵

✔️Payment plans are available and we never want cost to be a barrier, so please get in touch if you have any worries.
✔️Check out the images for all the details.

📩 To book or ask a question, email [email protected] or [email protected]

26/07/2026

Some of the hardest parts of CMT are the ones nobody notices.

5 things people don't see about CMT.

Fatigue. Exhaustion that rest doesn't fix.
Pain. In the nerves, muscles and joints.
Balance problems. Steps, crowds and uneven ground take real concentration.
Numbness. Hands and feet that don't feel what they should.

Daily planning. How far is the walk? Will there be stairs? Somewhere to sit?
Every trip out is worked out in advance.

👇 If you live with CMT, what would you add?

Learn more at cmt.org.uk

24/07/2026

Not all disabilities are visible.

Charcot-Marie-Tooth affects the nerves in the arms, legs, hands and feet.
Most of the time, you can't see it at all.

What people don't see is the fatigue, the pain, and the effort every step takes.

👇 What do you wish more people understood about living with CMT?

Learn more at cmt.org.uk

06/07/2026

It’s July, which means it’s Disability Pride Month 💙

This month is a chance to celebrate our community and recognise everything our CMT Kids and Big Kids achieve every day!

If you're a young person with CMT, or you're a friend, sibling, parent or carer looking to connect with others, we're here for you

💬 Join our private Facebook groups:
https://www.facebook.com/groups/1757471168200538/
https://www.facebook.com/groups/983604400521372/

🌐 Find out more about CMT Kids:
https://www.cmt.org.uk/cmt-kids/