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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.

Monday, September 10, 2012

What an awesome day!

What an awesome day.

Fall is in the air, it’s cool outside.  Dropped Jonah off to hie first day back at school.  He has a new classroom and teacher.  8 of the 12 kids from LY are in his class.  He was a bit apprehensive at first, but he ran in and said hi to all of his friends.  He gave me a great kiss and hug goodbye.

I woke up to a ton of votes on our CHASE Community Giving.  We had the highest voting day so far. Yesterday I went from parent to parent at the playground, passing out flyers and asking for votes.  I tell yeah, having to tell a stranger that your child has a fatal genetic disease is gut wrenching-tear jerking stuff.  I had to take a deep breath and leave the park.  I gave myself a pep talk and headed back in.  It worked though we got a bunch of votes.

If anyone wants to help me out with our guerrilla campaign- passing out flyers on the street and asking for votes... Let me know and I’ll get you a bunch of take away flyers.
We’re struggling to keep our $50,000 payout rank.  We need to be placed at #46 to win $50,000.  The top prize is $250,000 and the following 9 are $100,000 payouts.  We could get into the top ten if everyone voted and spread the word.

In other good news.  Jonah and I will be going to California at the end of the month.  I have been invited to the Global Genes gala and summit.  I’ll be speaking on one of the panels.  The organizers were in love with the pic’s that Dodi took of Jonah while in OR, their blowing one up as a poster.  There will be hundreds of who’s who is the rare disease community there all looking at my adorable boy.

I was also nominated  for an award for the Leadership in Advocacy presented by the Association of University Centers On Disabilities.  They’re a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families and communities.  Not sure what happens if I win it, funding would be nice.  However the nomination itself is an honor.

I submitted a poster to be presented at the NORD/DIA conference.  I hope it’s accepted.  Since my first conference I wanted to have a poster for one of the poster sessions flanked by scientific posters presented by PhD’s.  We also applied to speak about Phoenix Nest-JJB-ODDT and the Partnering for Cures conference.  I’m pretty sure we’ll be accepted for that conference.

Lots of exciting stuff going on.  Most importantly, Jonah is happy and healthy.  Back to work.  I’m absolutely obsessed with winning a huge grant from CHASE.  SO pretty please vote for Jonahs Just Begun and Sanfilippo Research Foundation.  You only have to vote once and you only vote for 2 charities.... Unless you have a CHASE account then you can vote 2 more times!

Just follow the links:
Jonahs Just Begun
Sanfilippo Research Foundation
p.s. VERY IMPORTANT.  Remember to promote.  Once you cast your vote hit like and send to all of your friends!

Thanks in advance,
JJB/Jill

Tuesday, September 4, 2012

This Thursady the 6th!

This Thursday the 6th.  Voting begins on FaceBook.  Jonah’s Just Begun and our friends at Ben’s Dream also known as the Sanfilippo Research Foundation will be competing in the CHASE Community Giving contest.  The grand prize is $250,000 there will be another 10 charities that receive $100,000 the other 190 winners will get Between 50,000 and 10,000.  You all know what prize I’m shooting for!  $250,000 would pay off our gene therapy research with plenty left over for another project!

We have between the 6th-19th to vote.  Each FB holder can vote for two charities and you only vote once.  I’m asking that you vote for Jonahs Just Begun and Sanfilippo Research Foundation aka Ben’s Dream.  If you have a CHASE account you can vote through your  online account.

So please put your hatred for CHASE aside, they’re willing to help us save our kids.   Go to the Chase Community Giving pg. and like the page Allow the app and vote on Thursday.
Here is another link that will take you some instructions and a link to JJB’s profile page.
http://bitly.com/bundles/o_4hhsubevla/2


Salut, Prost, Cheers... To A Cure was a beautiful event.  I have to thank my organizers:  Mom, Melissa and Carole who bust their butts to pull of another gorgeous event.  It was really very lovely.  Our in house photographer Dodi Holm from Rustic Pear Photography, took a ton of pictures, she’ll have them up for review soon.  Meanwhile check out the adorable pic.’s she took of Jonah at the Kirkham’s farm.

The Jake Blair band was freakin’ amazing and the wine was exceptional!  Such wonderful people for coming out on a hot day to pour for us.  I can’t them enough, their generosity makes the event.  A few days after the event I took my friend Mari out to taste some of the wines that we didn't have time to taste at the event.  We stopped at White Rose, I won't play favorites but I have to say not only is their wine superb, but the people working there are wonderful.  I introduced myself to Diego as Jonah's Mom.  He knew exactly who I was and said it was such an honor to pour for us.  That they had been there every year so far and to count them in forever.  Mari and I asked if they happened to have an Iphone charger, he said no but that he had one in his car.  After the other patrons left Diego went out to his car and brought us his car charger.  He just gave it to us to keep!  I gave him a hug and went to pay for our tasting and he refused to take our money.  Now that's good people!

We also had a brewery this year, Fire Mountain Brewery.  I was really impressed with his beer, delicious.  Wish I could say the same for the food. huhum

Next year is already being put together.  Same place Stoller Family Estates, we will definitely have to bring a brewery back and I hope to have all my wineries back again.  Jake Blair's band has already signed on and we’re working out a date so that Willamette Valley’s BBQ master The Ribslayer, can serve us his pulled pork sliders and stuffed Portabella mushrooms.

I was touched by all the adorable crafts that my nieces made to sell, which brought in quite a bit of money.  We had lots of wonderful jewelry for sale and tons of handmade crafts inspired by locally grown lavender from the Meddici Vineyards,  The Meddici’s lost a great grand child to Sanfilippo and so were happy to be a part of the event.  The esteemed Dr.  Bob Steiner gave a moving and inspiring talk on what it means to the community to fundraise and bring awareness to rare diseases.  The auction items were inspired by the Willamette Valley, lots of wine donations and local art and beautiful quilts by my aunts.  Several families from Oregon's rare disease community came out.  Aimee even graced us with her presence this year!

I have lots more to tell you all about, but I have a feeling you’re going to be overwhelmed with all of JJB’s communication over the next few weeks.  Be on the look out for our email with your voting instructions.

Hope you all enjoyed a wonderful summer!  More soon.

Ok one last story. May 2010, diagnosis week Mom.  Jeremy and I got the news, we wer stricken, crying non stop.  I started googeling for other families affected by the disease.  I found this clip
It just about broke my heart, but I took Jennifer's advice and I turned that negative and made it into something positive. The Siedmen family were the folks that gave me the idea to create Jonah's Just Begun.  It's an honor to be running with them and I  hope we both win big $$.
This interview was done in 2007.  Ben doesn't walk anymore and Noah has gone off to college.  Ben's logo is of a barn, when Ben said he wanted to be a farmer when he grew up.  The photo shoot at my friends farm reminded me of the photo's of Ben playing on the farm, before he got sick.

Thanks in advance,
Jill for JJB

P.S. This just in.... There are 2 more Sanfilippo Foundations that just decided to run too.  Sadly we can only vote for 2 foundations.   I hope they can make it into the top 100 with the support of their communities.  More $$ for Sanfilippo research.  JJB however has made a commitment with our friends at Ben's Dream and will be supporting them in all of our promoting.