Monday, January 9, 2012
IN THE HOUSE
I have recently been touched by a campaign that has started to raise awareness of Spinsl Muscular Atrophy (SMA) and wanted to bring this to your attention. The campaign is called SMASH SMA and is dedicated to raising awareness of a disease that is the number one genetic killer of children under two years of age. One in Forty adults carry the gene that causes SMA and there is no cure for the disease. SMA came to my attention because of a little girl called Estella. Estella died last November aged 8 months. Since then her parents ,Tom and Maria, have made it their mission to raise awareness about the disease. Research into a cure is well advanced and there is hope that a solution will be found in the next three years. For the moment the parents are trying to raise awareness and to get screening for the disease. A simple blood test tells would be parents if they are carriers. With this in mind a petition has been started on the government web site and this has raised over 2,000 sigs in 3 weeks. Could I please ask if you would look at the SMASH SMA website for more details about the disease and the campaign. Www.smashsma.blogspot.com I think you will find the story compelling and persuasive. It is very sad but also offers so much spirit and hope for the future. In coming weeks the call for SMA prevention is going to become more and more pronounced. I would ask that you contact these parents to express your support for their awareness raising campaign. Anything that can be done in your own constituency to raise awareness would also be wonderful. This disease kills babies. It is preventable and it will one day be curable. I would like to be assured that my local MP is aware of the disease and dedicated to solving it. Tom and Maria are available at firstname.lastname@example.org Thankyou for your attention. I hope you find time to go and learn about Estella. You can make a difference.