What? It's a new year and I haven't posted one single time? This must stop. But I do have a great reason - Mr. T and I took a nice little anniversary trip to Laguna Beach, California the first week in January. Hello, seafood galore! Hello, Pacific Coast Highway! Hello sleeping in the most luxurious king size bed with fireplace in our room! It was heaven, I tell you.
More on that later. First, I'd like to ask for my first official blog favor. A friend forwarded me an email from a friend of hers who has two kids, Waverly and Oliver, that have San Filippo Syndrome, a disease that is so rare there is little funding for research. Though it was heartbreaking to read about these two precious children who are taking steps backward instead of forward like most kids, I jumped at the chance to vote, and to help spread the word on my blog so others could cast their vote too. It is such an incredible cause for an incredibly deserving family.
The mother's name is Shannon McNeil, and you can read more on her blog. Take a second to learn more about her precious kiddos, and I promise you will be moved to vote. I know I was.
Here's the skinny:
Team Sanfilippo, a non-profit group started by parents of children afflicted with Sanfilippo Syndrome, is in contention to win a $250,000 grant from Pepsi. This money will be used for research purposes, specially for gene therapy trials. The top 2 finishers at the end of January will receive the grant.
Winning this grant is so important, because pharmaceutical and biotech companies aren't interested in focusing on rare disorders, due to low profits. The burden is left to family driven 501c3 public charities to raise funds and get scientists to collaborate on treatments to save loved ones. Then, after a treatment has been developed, it's also up to the families to raise the money needed for clinical trials.
I am asking friends and family to vote every day for the month of January. It only takes a few moments and it could have a lifesaving impact on children who have Sanfilippo.
You can vote 3 ways once a day. Here's how:
1) TEXT 105582 in the body of your text to 73774 (PEPSI)
2) Click on http://www.refresheverything.com/curesanfilippo. You must first log on and then hit the VOTE button.
3) If you are on facebook, go to http://apps.facebook.com/pepsirefresh/idea/. Load the app and then search for "Team Sanfilippo" to vote.
Please vote in honor of Waverly & Oliver. Wouldn't it be great if one day, when families are told their child has Sanfilippo, there will be an effective treatment available to them, thanks to this opportunity for a grant.
Also, pass this information on to your family & friends. Post it on your facebook wall. Send out an email. Post it on your blog. Send a tweet. Let's get the word out and help this sweet family!