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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.