Since the TSA awarded its very first grant in 1982, we’ve funded vital research that has increased our understanding of TSC. Research can seem a slow business. The average length of time that it takes to bring a medicine from the laboratory bench, through trials and into clinical use is 15 years. It’s astonishing to think that it is precisely that length of time since the TSC1 and TSC2 genes were cloned and that, because of these discoveries, there is now a medicine to treat some of the manifestations of TSC. But the advent of the first licensed medicine for TSC is not the end of the journey. It is an important landmark as we journey along the road to better treatment, better care and ultimately to a possible cure for TSC.

I often find myself reflecting on how massively unfair it is that vanishingly little public money has been spent on TSC research. This needs to change. In our response to the government’s Rare Disease Plan consultation last year we made our position clear. Without specific calls for rare disease research or at the very least a strategic uplift for applications for rare disease research, the neglect will continue. The government has said that at the end of this year it will reveal its plans for supporting rare disease research. Dare we hope for new opportunities for public funding of TSC research? I’m cautiously optimistic; the rare disease community has really united on this particular issue and our collective voice is strong.
Our members tell us that research is fundamentally important to them. As long as the TSA can continue to count on the dedication and hard work of fundraisers and supporters we will continue to drive research forward. In the 30 years since the TSA awarded its very first research grant, the sums of money dedicated to research have been modest in comparison with the vast sums that are spent on research into more common conditions; but every penny has been invested wisely and well. Together we need to continue attracting the best academic and clinical researchers into TSC research – and we need to keep them there for the journey ahead.