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Wednesday, May 23, 2012

I'm so done with this day.

I’m so done with this day.  I can’t focus. I need to get some air, but I can’t leave my own private hell.  To many fires to put out.  Mostly ones that I created, I’m good at that.  Sometimes it’s a good thing sometimes it’s a bad thing.  It’s only bad if you can’t clear the smoke away.  It’s just the energy that it takes to clear the air and when you create too many fires in one day, then it sucks the life out of you.

We’re all desperate for answers... the truth, help, and understanding.  We’re all running on borrowed time, our emotions are high; our nerves are rubbed raw. Our Sanfilippo community is as close as family.  I see my Sanfilippo families and scientist more then I see my own flesh and blood. 

Just trying to shake down the truth and find some answers.  I may have rubbed a few feathers the wrong way today.  But at the end of the day our Sanfilippo Community is family.  We need eachother, our childrens lives depend on our ability to work with one another.  We’re more powerful in numbers and we’re up against the hardest battle that anyone could ever imagine.  We’re sheep working with Pharma and the FDA (the wolves.)  It’s hard to tell which representative is just the wolf in sheep’s clothing.  It’s impossible to know, we just have to trust our instincts.

This was my day.

Then I saw this documentary and it put everything into perspective and brought me to a fetal position, I haven’t cried this hard in a year.  This is Jonah’s fate.  I’m working 7 days a week 12 hours a day, to stop this from happening to Jonah.  My families are relying on me to stop the disease from taking their children too.  Watch this mini documentary and you will have a better idea of what we’re up against.  I know all these families but 1 (the family that lost a child)  You should know by now that Elouan and Laura are part of our family

Wednesday, May 16, 2012

Time to get some running shoes!

For Mother’s Day I got myself a pair of running shoes.  Not making any resolutions here, but I figure if I could quit smoking I can start running.  As usual Ive got more balls in the air then I can count!  Need to run off some steam and clear my head.  Having a hard time prioritizing.  Everything is important.

First up- Salut, Prost, Cheers... For a Cure. Our third annual wine tasting and silent auction event.  Mark your calendars for August 12th.  Stoller Vineyards has been kind enough to loan us their picturesque field again!

Purchase your tickets now and plan ahead, just follow the link.  Snail mail invites will be going out soon.  You should already have the email blast in your inbox.  Don't worry we'll keep reminding you.
We’re doing things a bit differently this year, so check out our event page for more details.  I’m really looking forward to this event a little R&R in OR, is just what the doctor ordered. 

The lineup of wineries pouring is going to be big and bold.  Stoller will be there of course, August Cellars, Walnut City Wine Works, White Rose Estate, Antica Terra, Twelve and J. Wrigley.  Plus more to come.  We're also trying to secure one of our local brewery's to come on out.  The Jake Blair Band, that everyone is raving about will be playing too!

JJB's calendar for the entire year is filling up.  Looking to the future, with the help of JJB’s assistant, Mari (you'll get to meet her at Salut, Prost, Cheers... For A Cure.)  It’s nice to actually start planning ahead, instead of playing every day by ear.  But it means being more organized.  We’ve settled on a few staple fundraiser/events for JJB: Rare Disease Day-Flash Mob in February, Walk in March, Street Fair in June and the Wine Event in July. 

Got a third job now, CEO of Phoenix Nest.  Getting our Biotech startup off the ground, is the catalyst for the need to start running.  I'm looking forward to announcing the launch of Phoenix Nest.   Any time now... Check out the logo that Jen designed on the sidebar!  Heading to Philly in a few days to work out the details for Phoenix Nest.  I'll be meeting with our famed project manager, Sean Ekins and our esteemed scientist Brian Bigger.  Heading to the Netherlands at the end of June, meeting with our European families and all of our scientists.  Days before that trip,  JJB will be honored at the LIFE-academy's graduation ceremony!

Mother's Day at the Bronx Botanical Garden.  I love Foxgloves

However, Peonies are my favorite.

Purple Rose in honor of MPS awareness day, May 15th.
Time to get to work.  Hope everyone had a fantastic Mothers Day and a special Happy Mothers Day to our Mom's Grandma Jan and Grandma Janet.

Monday, May 7, 2012

I have a really good feeling about today.

Life Academy Idol
I'm waiting on more pic.'s and video. 

The HS students at LIFE-academy in Bensonhurst, Brooklyn lifted my spirits up higher then anyone has done since diagnosis. I feel like I can tackle the World today and I needed that lift, this week is gonna be a make em or break em week.

Let me tell you these kids have talent!  I was spell bound by the voices and performances from: Amber Lee, Jordan Knight, Alyvia Juarbe, Jaquae Lewis, Miriam Salazar,  Kiah Armstrong, Kiazi Halpren, Tiffanie Galan, Justin Jagbir, Michael Starks, Jessica Miranda, Mirianna Torres, Andrew Steinwurzel, Thadius Regisford and Mariah Ralph, Alex Vereen Sr., Eric Townsly, Colionne McDonald, Angel Lopez, Theresa McDonald and Juileon Alberion.... These kids brought the house down.

The concert was diverse, funny and uplifting.  I laughed, I cried, I rejoiced. There were solos by: Tiffanie Galan, Mariah Ralph, Miriam Salazar, Mirianna Torres, & Amber Lee... That brought tears to my eyes.

I loved the- The Life Academy Idol skit (I laughed my but off), music by DJ Julieon, dance solos, and tribute dance to MJ.  The show was very well directed, the musical director just so happened to be Mrs. Vereen (Reverend and former wife of Ben Vereen) Ben Vereen made a video for the show, highlighting the need to raise awareness and funds for Sanfilippo.  The sound system and production was donated by Paul Lee, who just so happens to be Shaggy’s tour manager.   The show was a class act and the kids couldn’t have been more respectful and appreciative to our cause.

Thank you Tiffanie Galan, for making this happen and Mr. Mandracchia for supporting Tiffanie’s idea and JJB.

I did a lot to promote the event, via web, press release etc.  But I didn’t twist the arms of any of my friends to come.  I knew it was not a good hour for those of us that have kids.  I sent Jeremy and Jonah home early.  Jonah was loosing it.  Today at school drop off I was really touched by how many of the parents asked how the show was and apologized for not making it (because their kids ate dinner, take baths and go to bed between 6-9.)  I get that... mine too.  Anyhow, I have gotten emails and facebook messages asking how others can support  LIFE-Academy’s efforts to raise $10,000 for JJB. To support “Helping Hands for Jonah” you can make donations through JJB’s cause wish
or you can contact Mr. Mandracchia. and purchase a helping hand- hands that the kids are selling and posting on the hallway at their school.  Send Mr. Mandracchia a check in any denomination and mail it to: LIFE Academy H.S. Attention Mr. Mandrachia 2630 Benson Ave. Brooklyn, NY 11214.  Write the check to Jonah’s Just Begun.

The most adorable act belonged to Jonah.  When we were introduced on stage, I started my thank you speech.  Jonah stopped me in mid sentence and asked for the microphone I held it to his mouth.  He started to sing the ABC’s. He passed me the toy he was holding and took the microphone in both hands and proceeded to belt out the ABC’s.  He then took a bow and said thank you.  Priceless. That’s my boy.Helping Hands for Jonah- Cause Wish