There are a few different organisations out there for Rett Syndrome. The one we support financially is the RSRT (Rett Syndrome Research Trust) and lucky us, this week there has been a UK chapter opened! RSRT UK is a trust to raise funds solely for Rett research projects. There are a few utterly groundbreaking and amazing advances happening in the world of research for a cure for Rett. There WILL BE a cure for Rett in Grace’s lifetime. It’s only been 11 years since the gene was discovered and now, Rett has been reversed in a mouse by Professor Adrian Bird of Edinburgh.
This research can’t continue without money. Mice cost money. Lab time costs money. People think of medical research as some black hole which money gets thrown into and no one knows what they’re giving it for. But this isn’t the case when you give to RSRT. There are no six-figure salaries drawn by the chair people of RSRT or RSRT UK. There isn’t a glass building sucking up funds and electricity. Everyone who runs and supports the Rett Syndrome Research Trust, including the web and graphic designers, photographers, etc, are personally affected by Rett and make no money from their efforts. Most actually have a child with RS.
There are other organisations which are far more devoted to family support, literature, public awareness and medical research which is interested in mapping RS progression in girls. And that’s all very good. But I don’t need another brochure or medical study that tells me my daughter can’t use her hands. I watch it every day. I need a CURE. Organisations like RSUK and IRSF have a tremendous support for families while they’re waiting for a cure. But please give your money knowing where it is going and if you want to give to a trust where 98% of the money goes to buy lab time, mice, petri dishes and coffee to keep Adrian up all night, please give to the RSRT.
And if you didn’t know, all charitable organisations publish their financial reports on their websites so if you want to know how much they raised and where it all went (building? phone bills? salaries? RESEARCH?) just get nosey and check them out.