We got another 6 inches of snow last night, so no school today. Oliver is still getting over a cold and Waverly was sick again last night. We spent the entire morning in our pjs watching Playhouse Disney and playing with every toy Oliver could find. It was a nice day. It looks like we are going to have a few more snow days coming our way. They are predicting we will get another 20 inches Friday - Saturday.
Today I spent time corresponding with other MPS families. There is a lot of discussion involving fundraising for Sanfilippo research. A group of families has started a non-profit with the sole intent of funding research. I think it is a great idea. If any of you have seen the movie "Extraordinary Measures", you know that parents can play a vital part in getting money into the hands of researchers. So few people are afflicted with Sanfilippo, many pharmaceutical companies do not pursue research because it is not profitable for them. Sanfilippo has the additional hurdle of the blood brain barrier - the body's defense system to keep the brain safe, also prohibits helpful medicine/enzymes/proteins from reaching the affected areas. The hope is that families can individually raise money to fund research that could provide a viable treatment option and hopefully a cure.
There are many individual families that raise money - some have their own non-profit organizations to provide grants to researchers and some use the money to provide financial assistance to MPS families. We also have the MPS Society. They host an annual conference, publish a magazine with relevant articles and information, connect families, provide financial assistance to families for equipment or other medical needs and they give out research grants.
I am trying to make the most informed decision and in the midst of asking questions, people were offended. It was never my intention to hurt someone's feelings. For those of you who know me, confrontation is something I avoid at all costs. Emotions run high when you have 50 MPS families all weighing in, and how could they not. We are all under an incredible amount of stress. We all want to save these children. And we all have different ideas of how to go about finding a cure.
My hope is that in all of the words that were said today, we could all step away and figure out how we can be more effective. I know I am trying to decide how I can become involved. I would love to host a fundraiser, I simply need to come up with a good idea for one.
In a perfect world, I wish we could all work together towards one common purpose. We could be such a powerful force for change. Instead, I think we will have a few dedicated groups working their hardest to fund the necessary research so we can find a cure. Ultimately, that is what we all want.