Thanks to all of you who are voting and passing the word on to your friends. Team Sanfilippo remains in 1st place for the $250,000 grant from the Pepsi Refresh Project. (Voting instructions can be found below.) Remember that you can vote 3 different ways EVERY day for the entire month of January. We have to finish the month in one of the top 2 spots in order to win the money.
I have listed numerous reasons why this is so important to me. One is that Sanfilippo Syndrome is considered an "orphan disease". That means the disease has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. There are simply too few children diagnosed each year for the pharmaceutical companies to invest the millions of dollars it takes to bring a drug or treatment to market. So, the burden is left to families and their 501c3 charities to raise funds for research and clinical trials. In layman's terms....drug companies won't make enough money selling the medicine, because there aren't enough kids diagnosed with Sanfilippo.
This is also very personal. When Waverly & Oliver were diagnosed, we were told that there was nothing we could do to stop the progression of the disease. Our doctors would treat the symptoms, but there was so treatment option. It was a crushing feeling to be told your children are dying and there is nothing we can do about it.
I decided to focus my energy on making memories with the kids. Taking advantage of what they were able to do and enjoying it. Celebrating the little things along the way. I try to be an advocate for children with special needs. I try to use this blog to open the hearts and minds of other people to families who have children with special needs. It can be a lonely and isolating existence.
I also want to work towards finding a cure for Sanfilippo. The disease has done a lot of damage to Waverly & Oliver's brains. I am not sure if there is time to develop a new treatment option and see it have a positive effect on my kids. However, I hate the thought of parents sitting in a doctor's office and being told there is nothing to do.
Please help me by voting and sharing the cause with your friends. This grant will allow us to take another step forward towards finding an effective treatment for this horrible disease. I want Waverly & Oliver to be a part of finding a cure. I want them to inspire people to act.