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National health charity CMTUK is to host annual conference on May 6th-7th

National charity, CMTUK, is hosting its annual conference, put together for 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 6th May, and Saturday 7th May with one of its speakers the UK’s leading authority on CMT, Professor Mary Reilly from UCL Queen Square Institute of Neurology. 

Tickets cost £14 for CMTUK members or students, or £24 for non-members and medical professionals.  More conference information and tickets can be found at https://bit.ly/2022CMTUKconference

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, physiotherapists, occupational therapists, a pain clinic, and orthotists.  Attendees can also meet and chat to other people from the CMT community in the social lounge.

The speakers at the conference include*

Day 1 (Friday 6th May):

11am: CMTUK’s Patron, Professor Mary Reilly, the UK’s leading authority on CMT. Mary is Professor of Neurology at UCL Queen Square Institute of Neurology: ‘Opportunities and challenges in CMT therapy development’

2pm: Tom Woods, Senior Orthotist, NHS: ‘How to use orthotic principals to enhance function and improve the life of individuals with CMT’

3.30pm: Pain Clinic with Alison Wickham and Sarah Sturman, Dorset Pain Management Service: ‘The science of pain, and the 4 pillars of self-management’

4.45pm: Karin Rodgers, CMTUK Kids Update

Day 2 (Saturday 7th May):

10am: Dr Gita Ramdharry, Consultant Allied Health Professional in Neuromuscular Diseases at the Queen Square/MRC Centre for Neuromuscular Diseases, UCLH

11.45: Ed Sum, Occupational Therapist: ‘What occupational therapists can do for you’

2pm: Fiona Collier and Holly Sizer, Hydrotherapy and Neurology Specialist Physiotherapists, Broadstone Physiotherapy & Aquatherapy

3.15pm: CMT Research: An update from the CMTUK research committee

4.15: Ask the sponsors: Sponsors, including Dorset Orthopaedic, will showcase their latest CMT-friendly products and services, whilst answering questions from the CMT community.

Chief Executive of CMTUK, Simon Bull, said “Last year, we held our first ever virtual conference – it was really well received by the CMT community.  This year, we decided to keep the conference virtual, as it also gives the wider CMT community a chance to attend from anywhere in the UK, or even overseas.  There is a new discounted student ticket option this year, helping potential CMT practitioners of the future to learn more about our community.  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 social lounge element, so the CMT community is able to 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, so they know first-hand the type of support that is needed for our members.  The trustees will be joining the social lounge to chat to the community over both days.  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 sponsors, Dorset Orthopaedic, we would not be able to support all our members and health professionals.” 

More information and tickets can be found at https://bit.ly/2022CMTUKconference

*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 program are subject to change without notice.

About CMT:

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.

Simon Bull CEO CMT UK
Professor Mary Reilly, Professor of Neurology at UCL Queen Square Institute of Neurology
 Ed Sum, Occupational Therapist / Post Covid Service Clinician & Associate Tutor at the Royal College of Occupational Therapists / Norfolk Community Health and Care NHS Trust / University of East Anglia
Tom Woods, Senior Orthotist, The Robert Jones & Agnes Hunt Orthopaedic Hospital
Sarah Sturman, Specialist Physiotherapist, Dorset Pain Management Service, DHUFT
Alison Wickham, Specialist Pain Nurse and East Team Lead, Dorset Pain Management Service

Contact:
For media enquiries, or to request an interview or photos, please contact CMTUK’s PR agency:

Emma Estridge, at  Mushroom Marketing & PR                 

Tel: +44 (0)1202 392911/+44 (0)7801 036653 Email: emma@mushroommarketing.co.uk


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