Tuesday, September 18, 2012
Treading Water-2 Days left
We’re hanging in there by the skin of our teeth. Please hang in there with us. Just 2 more days of voting and this contest will be over!
We may have lost hold of our $50,000 grant but we’re hanging tight on a $20,000 grant. That money is already spent. We made our September first payment to our gene therapy scientist in Manchester, but we still owe Alexey $35,000.
I had really hoped to win at least $100,000. There is a Genistein trial that is shovel ready in the UK. All they need is 600,000 pounds to make it happen. Lots of people have mixed feelings about Genistein. Jeremy and I had Jonah on it for about 6months when Jonah was first diagnosed. It was expensive and honestly I was afraid of giving my baby something that I knew nothing about.
Yesterday I purchased 6mo of Genistein for $2,600! This was for my French friends they have 2 MPSIIIC kids. That’s another problem the pure form of Genistein is considered a food supplement in the US so the Americans can get it. Meanwhile I’m shipping it to my friends in Europe who in turn have to pay taxes to get it out of customs. If we had a trial we could get it approved in other countries, insurance would pay for it and the overall cost would go down. 600,000 pounds doesn’t sound like much for a treatment that quite possibly will slow the progression of the disease.
The most wonderful part about the contest was the help that I received from our community and friends abroad. We raised so much awareness! We made several new friends, friends of friends just learning about Jonah and the disease. I was really touched to see children in the neighborhood asking for votes at their schools and playground. We even had helpers set up a lemonade stand so that they could spread the word. I didn’t feel alone, new friends and old friends had our back.
For CHASE account holder you get 2 more votes, click here.
To earn a bonus point cut and past this link to your timeline. https://apps.facebook.com/chasecommunitygiving/charity/view/ein/27-2957730?ref=251d5b64cd
Don’t forget to check back to JJB’s CHASE profile to see if you got it.
and remember to use your second vote for our friends the Sanfilippo Research Foundation.