National health charity, CMTUK, is to host Charcot-Marie-Tooth conference on 21–22 April 2023
National charity, CMTUK, is hosting its annual conference for people with an interest in Charcot-Marie-Tooth disease, including members of its charity, people living with CMT (Charcot-Marie-Tooth disease) and their friends and family. It is also suited to students with an interest in CMT as well as medical professionals such as GPs, physiotherapists, podiatrists, or occupational therapists. It takes place online over two days: Friday 21st April, and Saturday 22nd April.
The keynote speaker is Dr Alexander Rossor, a Consultant and Honorary Professor at the UCL Queen Square Institute of Neurology, the National Hospital for Neurology and Neurosurgery and Guys and St Thomas’ NHS Foundation Trust. Dr Alexander Rossor also undertook specialist neurology training in London, completing a PhD on Charcot-Marie-Tooth disease with Professor Mary Reilly at the UCL Queen Square Institute of Neurology.
Tickets cost £15 for CMTUK members or students, or £25 for non-members and medical professionals. More conference information and tickets can be found at https://bit.ly/CMTUK2023Conference
CMTUK is a national-reaching UK charity that provides essential services to its members and the wider community affected by the hereditary medical condition CMT (Charcot-Marie-Tooth). CMT damages the peripheral nerves, which means that muscles become progressively weaker over time, particularly in the hands and feet, which causes difficulty with walking, balance, and hand function. It can eventually cause stiffened joints that result in deformities of the feet and hands. In the UK, some 25,000 people are thought to have CMT, making it the most common inherited neurological condition.
The conference, of which the main sponsor is Dorset Orthopaedic, will provide information and research on CMT, as well as practical support from speakers including leading researchers, Citizens Advice representatives, occupational therapists and orthotists. Attendees can also meet and chat to other people from the CMT community in the lobby and expo areas.
The speakers at the conference include*
Day 1 (Friday 21st April):
13.30-14.30pm: Dr Alexander Rossor, Consultant and Honorary Professor at the UCL Queen Square Institute of Neurology, the National Hospital for Neurology and Neurosurgery and Guys and St Thomas’ NHS Foundation Trust: ‘An overview of CMT and an outline of recent advances in genetic diagnosis and treatments for CMT’
15.00-16.00pm: Tessa Craver, Senior Neurology Specialist Occupational Therapist at the National Hospital for Neurology and Neurosurgery in London: ‘Charcot Marie Tooth disease and the role of Occupational Therapy’
Day 2 (Saturday 22nd April):
10.00-11.00am: A video from Rareminds: ‘Mental Health for the Rare Disease Community’
11.30am-12.30pm: Jamie White and Dr Sue Eccles, Benefits Advisers from Citizens Advice: ‘Uncovering Benefits for those with a health condition or disability’
13.30-15.00pm: CMT Research updates from CMTUK, Royal National Orthopaedic NHS Trust, CMT Research Foundation, Charcot-Marie-Tooth Association (CMTA) and Hereditary Neuropathy Foundation (HNF)
15.30-16.15pm: Leah Saunders from the Skills and Learning Adult Community Education: ‘Gentle Movement and Chair Fitness’
16.30-17.15pm: Ask the sponsors: Sponsors, including Dorset Orthopaedic and ShoeFit will showcase their latest CMT-friendly products and services, whilst answering questions from the CMT community.
Chief Executive of CMTUK, Simon Bull, said “This year, we decided to keep the conference online, as it gives the wider CMT community a chance to attend from anywhere in the UK, or even overseas. This year’s conference looks set to be informative with the latest CMT findings, as well as interactive sessions and the opportunity for attendees to ask each of the speakers questions during the live sessions. The online platform also has a lobby and expo area, so the CMT community can meet each other socially, too.”
Simon goes on to say “Although there isn’t a cure for CMT and it can be very disabling, life with CMT can still be full, enjoyable, and worth living. Most of CMTUK’s trustees are living with CMT or have family members with CMT, so they know first-hand the type of support that is needed for our members. For a small charity, it’s really active with lots of information available about the condition, managing it, and living well. Without all the very generous support we receive, such as from the conference’s main sponsor, Dorset Orthopaedic, we would not be able to support all our members and health professionals. We have also received a grant from Pharnext which will help support this event.”
More information and tickets can be found at https://bit.ly/CMTUK2023Conference
*Details of speakers and topics are correct at the time of going to press. However, circumstances beyond our control may necessitate substitutions of speakers and topics for which we cannot be held responsible. All speakers and items contained in the programme are subject to change without notice.
CMT is a hereditary condition that damages the peripheral sensory and motor nerves. Because of the nerve damage, people living with CMT may find that their muscles become progressively weaker over time, particularly in their hands and feet, arms and lower legs and the sense of feeling can become dull or numb in these areas. As there are over 100 diagnosed types of CMT, symptoms can vary hugely, although some other key points about CMT are that it can cause chronic pain and fatigue. Some early symptoms could include difficulty walking because of foot drop, high arches, or abnormally flat feet; others will experience a weakness in the hand and forearms; some children may experience a perceived ‘clumsiness’ with falling over, and a difficulty with running and general agility.