The other day I received this e-mail from one of my friends and co-workers, Joanne. She reads my blog and catches up with my goings on through Facebook. she asked me for some help to raise awareness of Sanfilippo Disease.
Looks like you had a fabulous time in Vegas!
I’m hoping you can give me some help. I know your blog is uber popular and although I’ve never listened in on your new podcast, I’m sure you already have a huge listening audience.
I’m wondering if you can link a story on your blog to help with raising awareness of Sanfilippo Disease to generate more votes for the gene therapy idea on the pepsirefresh page, so that this disease will one day become a manageable chronic disease instead of terminal.
I’m sure you’ve seen my pepsi-refresh activity on my facebook page for the past week or so. Pepsi is giving away over a million dollars each month to fund great ideas, decided by votes from people. One of these great ideas was entered for voting during this month, voting runs until Jan 31.
The ‘idea’ is for funding a gene therapy to cure the genetic disorder Sanfilippo Syndrome (Team Sanfilippo Foundation 501C3). It’s listed under the $250,000 health category. In fact, it’s the #1 idea right now, easy to find.
Sanfilippo (MPSIII) is a devastating genetic terminal illness that affects children. Basically, you child is growing and thriving one day, then starts a downward slope to not being able to walk, talk, or eat on their own any longer, then it gets worse, children rarely live to become teenagers. It’s heartbreaking. You can google plenty of sites to learn more about this. It’s basically an orphaned disease in that it doesn’t produce enough income with drug companies, so they won’t put any money into it.
I got involved through friends Matt and Shannon, who I worked with many years ago. They’ve since settled in Virginia and had 2 beautiful children, both diagnosed with Sanfilippo. Shannon started a blog when they relocated to London, before the children were diagnosed. It’s surreal to follow the blog before, during, and after their diagnosis. It’s become a diary for Shannon. Thank goodness the Sanfilippo community is so close and welcoming, I don’t know what they’d do without them all.
I’ve listed the link to their blog, the pepsirefresh voting page (you can vote through facebook as well), and a youtube video a friend of theirs put together to raise awareness this month that is just beautiful, just a couple minutes long. If you watch the video, get a hanky ready, those kids are darn cute.
Please don’t feel obligated to do this, no hard feelings if you decide not to. I was thinking of ways to reach more people and I know your blog has a huge following, but at the very least, please vote on facebook 🙂
Of course I will help, Joanne. My readers are fantastic and can help raise this awareness too. Please help.
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