We were joined by Prof Mary Reilly (Professor of clinical Neurology at UCL) who spoke about the genetic research into CMT and how that informs therapies. We also heard from Dr Gita Ramdharry (Honorary Associate Professor at UCL) who provided an update on rehabilitation research.
Alex Williamson, an MDUK volunteer who has CMT, spoke about the realities of living with the condition and her experience of using adaptations to support her on a day-to-day basis. Orthotist Andrew Frame discussed his role in providing people with muscle-wasting conditions with orthotics such as braces and supports.
The panel was completed by Care Advisor Pamela Appleton, who spoke about the work that she does and the importance of listening and therefore signposting people towards to the right care for their needs.
There were some great questions asked by those that attended particularly relating to the challenges of living with CMT which were very helpful to others also living with the condition.
This seminar is part of the MDUK Muscles Matter 2021 online seminar series, which includes condition-specific sessions, practical sessions such as financial support and psychological care to help you live well, and seminars looking into ways you can manage your condition such as cardiac management or diet and nutrition.
You can see the full list and book onto these Zoom seminars here.