Marie James for #trusteesweek

Marie James, bringing a mothers perspective to the Trustee Board for #trusteesweek 

Our youngest son Trystan, was diagnosed with TSC in 1987 when he was 8 months of age. We have always regarded ourselves fortunate that we learned on diagnosis of the existence of the TSA and made immediate contact.  We gained the most heartening support and accurate information at a time when the telephone and postal mail were the means of communication.  On learning of the establishment of the Research Projects we were greatly encouraged and given hope for the future. Our fundraising and awareness campaign to support research into TSC began, it was and continues to be both therapeutic and rewarding, a positive focus to channel our energies. Following on from volunteering as a TSA Regional Representative and then Welsh Organiser, joining the Board of Trustees was a natural progression and an opportunity to enable me to further enhance my commitment to the work of the TSA. 

I draw from my varied range of experiences, my contacts and work with voluntary and user organisations with an interest in disabled children, young people and their families within Wales and beyond. Currently I am a member of the Task and Finish Volunteer Group and exciting plans are being developed to help address needs as identified in the Membership Survey. As the years advance, the personal experiences of raising a child who is now a young adult, have not only increased naturally but have been diverse.  This life experience has equipped me in a variety of ways in being able to lend support to others and the TSA. As a Trustee I am kept updated and informed in my endeavours to best serve our families regarding progress and the work of the Association and to play a part in the ongoing development of the Association to promote  Research, Support, Fundraising and Awareness projects. 

In my time as a Trustee I have seen much change and development within the TSA and wider world of TSC.  Research developments in TSC have made remarkable advancements with emerging treatments showing encouraging results. However there is still more to do; far too many encounter barriers to accessing services and treatments. I remain committed and retain a passionate ambition to help improve and make a difference in the lives of those affected by TSC. I very much look forward to meeting members who are able to attend the AGM/Conference this Saturday at Warwick.