Goals & Hopes for This Blog

When I started this blog, the only goals that I had in mind were bringing more attention to Spinal Muscular atrophy, telling Gavin's story, and having a more consistent way to send information to the Senate HELP Committee, and the only hope that I had for this project was that some action would be taken on the SMA Treatment Acceleration Act that has been in the hands of the HELP Committee since September; however, it has blossomed into so much more than a simple writing journey. Almost over night, it has become the foundation for a plethora of ideas that are being put into motion. Great actions inspire even greater actions, or so they say; and I am excited to share one of the biggest things that will be happening because I started writing this blog.

Though it is still in the planning stages, the first of what I hope to be many dinners will be held to raise a donation to one of the Spinal Muscular Atrophy Foundations. I'm not sure exactly what we will be serving yet; however, it seems like spaghetti is the safest bet. There will be tickets sold to the event, and possibly small raffles to help raise more funds. Tentatively, this event is planned for October 3rd, 2008 (barring any major objection from the state Health Department). The plan at the moment is to sell tickets or collect a donation at the door and to advertise the event in local papers, on the local news stations, and on the local radio stations. Of course, that means we might need a lot of spaghetti, but I am trying to be reservedly optimistic about this. Staying on point is the first big step.

At this time, I have not chosen which foundation will receive the donation, though I am looking the hardest at the three linked here in the blog. I want to make sure that the donation that I make will have the largest impact in finding a cure for SMA, and so, there is a lot of research that must be done. However, as soon as that decision has been made, then it will be announced here first.

One of the things that has been on my heart since starting this blog is how I am honoring my son and his memory; and to be completely honest, I do not think that I have been doing the best job of that over the past 18 months. Gavin deserves my every effort to find a treatment or cure for the disease that claimed him, and it is my duty to carry on that fight for him. Therefore, in addition to telling his story and providing knowledge through the words that I write, I will also be updating my progress on goals that are being set for pushing for progress in Gavin's name.