CMTUK is celebrating 40 years of supporting those living with Charcot-Marie-Tooth disease, a rare and little-known disability.

Although the organisation has been supporting people affected by CMT for four decades, many people may still be unaware of its work. Fewer still may be familiar with the condition that drives its mission: Charcot-Marie-Tooth disease.

Charcot-Marie-Tooth disease, commonly known as CMT, is a group of inherited neurological conditions affecting the peripheral nerves. It can cause muscle weakness, sensory changes, balance difficulties and problems with mobility and everyday activities. There are more than 120 known types of CMT, with the lifelong, progressive condition affecting everybody differently.

CMTUK is the UK’s leading charity dedicated to supporting people living with Charcot-Marie-Tooth disease and related conditions, and this year is marking four decades of raising the profile of and championing those living with the condition.

What began 40 years ago as a small support group has grown into a national community of more than 2,000 members, supported by a team, trustees, volunteers and regional groups across the UK.

The anniversary comes during CMT Awareness Month this October, giving the charity an opportunity to celebrate its history while encouraging people across the UK to learn more about CMT and get behind its work.

CMTUK is funded by donations. As part of its 40th celebrations, the charity is encouraging people to get involved, whether that means joining the #40for40 campaign, taking on a fundraising challenge, making a donation, volunteering, raising awareness or becoming a member.

Importantly, people do not need to have CMT to become a CMTUK member. Membership is donation-based, so anyone who wants to support the charity and its community can join.

CMTUK trustee Sophie Arnold, who has CMT and has been supported all her life by the charity, wants to see its work continue to thrive and build over the next forty years.

She said:

“One of the biggest challenges of living with CMT is that it is progressive. The condition changes throughout your life, which means the support you need changes too.

“I’ve been connected with CMTUK for as long as I can remember because my disability has evolved alongside me. Support isn’t something you need just once. It isn’t a case of attending a conference or joining a Zoom call and then never needing help again. New challenges emerge at different stages of life, and having a community that understands what you’re going through and can offer practical advice, reassurance and support is invaluable.

“CMTUK has been there throughout my journey. It was there when I took my first steps as a child, and it is here now as I take new steps wearing orthotics. I hope it will still be there in the future if I take those steps with the aid of a walker. That lifelong support is what makes the charity so important.

“While we are hopeful that advances in research will lead to treatments that can slow the progression of CMT, there will always be a need for people living with the condition to have somewhere to turn, whatever their age or circumstances.

“As CMTUK celebrates 40 years, we’re not just reflecting on how far we’ve come. We’re looking ahead to the next 40 years and making sure future generations, particularly because it is a genetic condition, affected by CMT know that they are not alone.

“Greater awareness of CMT means greater understanding, greater accessibility and greater support. That’s why raising awareness of this condition, and supporting charities like CMTUK, is so important.”

CMTUK began with its founder, Ivor Dartnall-Smith, who discovered in 1969 that he and several family members had Charcot-Marie-Tooth disease. Despite living with CMT himself, Ivor continued his work with the Salvation Army, including as Superintendent of a leprosy hospital in South India.

Inspired by Canadian CMT advocate Linda Crabtree, Ivor returned to England determined to create a UK support network. In 1986, that vision became CMTUK. What began with newsletters, fundraising and personal connections has grown into a national charity supporting people with CMT and their families across the UK.

Four decades later, CMTUK supports more than 2,000 members, providing information, advice and community support through its helpline, regional groups, online communities, events and resources for families and healthcare professionals.

The charity also works to improve understanding of CMT and support research into better diagnosis, treatment and care.

Its annual conference brings together people living with CMT, families, clinicians and researchers, while its ComMenT magazine continues to share research, information and real-life experiences.

Supporting the next generation is a key part of CMTUK’s work, with CMT Kids and Big Kids (18–30) creating opportunities for children and young adults to connect with others through online communities, family day trips and annual activity weekends.

For CMTUK Chief Executive, Simon Bull, the 40th anniversary is a chance to celebrate the charity’s history while looking firmly towards the future.

He said:

“It is quite something to think that an organisation which began as a small support group 40 years ago is now a national charity with a community of more than 2,000 members.

“But despite everything that has changed, the reason CMTUK exists has remained the same. People living with CMT need somewhere to turn, somewhere to find reliable information and somewhere to meet people who understand.

“Our 40th anniversary is a chance to celebrate everyone who has helped us get here, but it is also a chance to think about what comes next. We want the next 40 years to bring better diagnosis, better care, more research and, ultimately, effective treatments and a cure.

“We cannot do that alone. We need our community, our supporters, our volunteers and the wider public to come with us. We’re hoping to see fundraisers take place across the country; we already have a sponsored swim taking place in Glasgow. We’re inviting people to mark our anniversary by raising £40 in whatever way works for them, whether that’s a bake sale, sponsored walk, swim or another fundraising challenge”.

The charity has nine clear recommendations for change and is calling for action from government and NHS leaders. They The support for CMTUK stretches across the UK, with communities coming together throughout CMT Awareness Month to raise awareness and funds. On 27 October, Blantyre Amateur Swimming Club in Scotland will take on a sponsored swim for CMTUK, with swimmers aged seven and up, alongside their coaches, including a CMTUK board member who lives with CMT, taking to the pool for 30 minutes, 60 minutes or two hours to see how far they can swim.

The charity hopes that its 40th anniversary will help introduce CMT to people who may never have heard of the condition before, while also reminding those already affected that support is available.

And after 40 years of looking after the CMT community, CMTUK has no intention of slowing down.

From a small idea in 1986 to a national community in 2026, the charity’s message remains simple: together, we are stronger.

How you can help

CMTUK is asking people across the UK to help it begin its next 40 years.

You can:
• Become a member and support CMTUK’s work, whether or not you have CMT yourself
• Fundraise £40 for 40 years
• Donate to help fund support services, community activities, awareness and research
• Help spread the word about CMT during October’s Awareness Month
• Share your story if you or someone you know has been affected by CMT

Find out more at www.cmt.org.uk

For further information, interviews or images, please contact:

CMTUK
7a Churchill Court
33 Palmerston Road
Bournemouth
BH1 4HN

Tel: 0300 323 6316

Mob: 07918 056385
Email: Vicky@cmt.org.uk
Website: www.cmt.org.uk

About CMTUK

CMTUK is the UK’s leading charity dedicated to supporting people living with Charcot-Marie-Tooth disease and related conditions.
CMTUK supports people across the UK through information and advice, a dedicated helpline, regional support groups, online communities, events, CMT Kids and Big Kids activities, research and resources for healthcare professionals.
CMTUK was established in 1986 following the work of founder Ivor Dartnall-Smith.
CMTUK is funded through donations and does not receive government funding.

About Charcot-Marie-Tooth disease

Charcot-Marie-Tooth disease, commonly known as CMT, is a group of inherited neurological conditions affecting the peripheral nerves. It can cause muscle weakness, sensory changes, balance difficulties and problems with mobility and everyday activities.

There are more than 120 known types of CMT. The condition affects people differently and is lifelong.

CMTUK’s helpline is open Monday to Friday, 9am to 2pm, on 0300 323 6316.

Registered Charity Number: 1112370.

---