Mucolipidosis research initiative – July 2016

Absolutely delighted with the success of the fundraiser conducted with fellow board members of ISMRD over the first six months of 2016. We cautiously estimated about $50,000 might be achievable, but decided to have an ambitious target of $100,000. The final result is a hugely exciting $150,000, in US dollars, for research on Mucolipidosis Types 2 and 3, and a call for research proposals has gone out with a deadline of 15 September 2016.

Contributions from affected families and their friends were supplements by several MPS Societies around the world, and other private foundations chipped in as well. For the rarest of diseases, contributions from families and support groups can be a vital catalyst in promoting research and finding ways to improve clinical care and explore possible therapies. Such a satisfying project to be involved in.