Thanks to all of our members (over 100) who responded to the original call to suggest questions for research and then later voted on their importance. The research priorities cover all spinal cord injuries, whether caused by accidents or by inflammation eg TM and Cauda Equina Syndrome. More information is available on the SCI PSP, the SCI/PSP press release and the top ten priorities.
TMA Podcast on 'The Role of Pharmaceutical Companies in Drug Development for Rare-Neuro Immune Diseases: What the Community can do to help'
Click here to read more and register.
WheelPower - British Wheelchair Sport will be hosting a Primary Sports Camp at Stoke Mandeville Stadium, Aylesbury on Saturday 18th October 2014. The Primary Sports Camp is open to children with physical or mild sensory impairments between the ages of six and eleven years old. All are welcome to attend the camp and coaches will attempt to include parents, teachers and escorts in the activities.
The Neurological Alliance is a campaigning organisation – the collective voice of over 80 brain and spine charities and other key stakeholders in England, including the TMS.
For the first time, the NA is undertaking a survey of neurological patients’ experiences. TMS is encouraging all members who live in England to complete the survey (it will take around 15 minutes). The deadline is 15th September.
The results of the survey will help us compare TM diagnosis and treatment to other conditions, and also to compare how neurological patients are treated in different parts of UK. This information will feed into a report later this year with recommendations how care can be improved. Thank you for your help.
Click here for the survey.
About the survey
The Transverse Myelitis Society has agreed to be a Study Partner to explore how patients affected by rare or genetic conditions and their caregivers define 'value' when thinking about new medicines.
The survey is intended for both individual's affected by rare/genetic conditions and their care givers. Participants in the survey must be living in the UK. It will take about 20 minutes to complete. The survey is open until 15 November 2014. Click here to read more about the study and begin.
This survey is aimed at patients and caregivers affected by a rare or genetic disease living in the United Kingdom. It has been approved by King’s College London Biomedical Sciences, Dentistry, Medicine and Natural and Mathematical Sciences Research Ethics Subcommittee (reference: BDM/12/13-49).
Her Mum, Viv pictured above to the right, has completed this run three times for charity.
Viv recently featured in a News Blog when she won the 'Volunteer of the Year' award for keeping her Contact the Elderly group running even though she herself was in hospital.
See more and register by clicking here.
The TMS committee jointly contributes to this blog.