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Wednesday, June 6, 2012

Why do we all make promises that we can’t keep?

Why do we all make promises that we can’t keep?  We’re all waiting for a cure for our kids, we hang on every word that our scientists and clinicians say.  Reading into their statements, hearing what we want to hear, clinging to hope.

February 2011 Jeremy and I went to the WORLD conference in Vegas.  The Sanfilippo community was anxiously waiting for Zacharon to take our first treatment to clinical trial.  Little did we know then, but Zacharon had just partnered with Pfizer to help them finance the R&D for our treatment. At the conference, if you all remember from my earliest caring-bridge blog. I told our friends and family how Brett- the lead scientist and co-founder of Zacharon, introduced his son to Jeremy and I.  Brett told his son that Jeremy and I had a little boy too and he was going to help him (Jonah.)

I so desperately wanted to believe Brett, I envisioned Jonah being the first Sanfilippo child to walk away from this insidious disease unscathed.  Zacharon’s treatment, would slow the progression of the disease, buying us some time for a more aggressive treatment to be developed.  I never truly hung my hat on Brett’s proclamation... I want to believe it, either way I’m grateful for the hope that Brett gave us.  We’re still waiting, it’s been 2 years now... Fortunately there is a lot of science now and I have turned my attention to other prospects.. Don’t put all your eggs in one basket, That’s my motto!

Then there is our ever so self professed brutally honest scientist Brian Bigger. Brian goes out of his way to not make any promises. Reminding me every time I see him, that a treatment might not come in time for Jonah.  I’d love to hate him.  He’s just scared that we will forever hold him personally responsible for not single handily saving our kids.  He’s quite egotistical, that’s why I like him and trust him to go the distance.

Then there’s me... I have promised all my families that they have my word... I promise!  I won’t quit until we have a curative treatment for our kids.  Yes... deep down we all know that our kids (this generation) might not be able to benefit from the treatment that we brought to market. BUT WE DON'T NEED TO BE REMINDED! It just goes without saying... We have to have hope!  What else is there?

Today I am reminded of those that never promised anything but have provided without complaint or need of praise. My Mom & Melissa, who are making our wine tasting event happen, it's going to be beautiful and delicious.  Sean, Mari and Jen who just do it without being asked.  My husband who has risen to the occasion; laid his sadness aside and has taken over all my house wife/mom duties.  Without complaint Jeremy: cooks, cleans and attends to Jonah’s demands.  For better or worse... they are all doing what they can, so I can keep my promise.  My sincerest thanks.

In order to hold up my end of the bargain I need for JJB to raise another 20K in the next three months.  Recently the EveryLife foundation donated me their text to donate widget.  All I needed was for 100 of our supporters to text “Rare” to the number 85944. I had a month (May 16th-June 16th) to raise 1,000 dollars to be matched by EveryLife.  I honestly thought that could be done  in one day.  We have 10 days left for another 50 people to take the opportunity to help JJB raise 2K and help me keep my promise. Over a 100 people read this blog, just saying... I know not everyone can afford an extra $10 bucks (I hear that.) If you don't text follow this link.

While you’re at it you might as well purchase your tickets for “Salut, Prost Cheers... To a Cure.”  Follow the link and check out the fantastic lineup of wineries pouring.   Music by the Jake Blair Band, buffet catered by Nikki Stokes the new owner of Uncorked.  The sponsored tables will have a beautiful platter of artisanal cheeses, spreads from the Republic of Jam, bread from Pionteks Bakery and hand crafted olive oils. Plus two bottles of wine from the Stoller Estate.  JJB wine glasses on the house. Seriously... get a table. Invite 8 of your friends to go in on it with you and have the time of your life (designate a driver!).  If you have a company, your logo will be plastered every where.

I'll be 39 on Sunday!  How I got here I don't know, I do know that this is going to be a huge year!  A week after my Birthday I'll be in Boston rubbing elbows with VC's, pitching Phoenix Nest to anyone who'll listen.  Jeremy and Jonah will meet up with me in Boston and we'll all drive out to Cape Cod.  The Burke's rented a cottage on the beach, great place to celebrate Fathers Day.  Can't wait to relax with my friends and watch Jillian, Lindsey and Kelsey dote on Jonah.  Then I'll run home repack and head to our patient population meeting in the Netherlands.   See my birthday wish.