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Tuesday, September 18, 2012

Treading Water-2 Days left


Treading Water!

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. 

Two years later, Jonah is slightly showing the traits of Sanfilippo. His hair is changing texture.  He’s more aggressive and very impulsive, he has no fear when it comes to cars.   His sinus’s have gotten  bad, last winter was horrific.  So we put Jonah back on Genistein.  We could see an immediate difference, Jonah is more pleasant and less combative and his sinus’s have been good.  The thing is we’re really just guessing on the dosage.  We don’t have clinical data on the storage accumulation, is it lowering??? We won’t know until we get a trial and really look at the data.

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.

Back to the contest.  It was a lot more work then I had imagined, but the idea of winning big $$$ drove me to give it my all.  I hit the streets soliciting votes from strangers for days.  Tomorrow I’m going to wall street and pitch my case that we need to win back some of the money that CHASE stole from us.  So that we can pay for research and clinical trials that our government ignores and big pharma turns their back on.  With a patient population of 1/1.4 million we are the underdogs, no one see’s the benefit of creating a drug for us.  This will be my grand finale for the contest.

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.

With that said if you could all just rally the votes one more time, we’re in the home stretch. Wednesday at midnight is the last of it. We’re so close to making our last payment to Alexey and it cost the fb holder nothing, just a moment of your time.

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.