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Wednesday, April 29, 2015

A double life

A double life

A friend of ours asked why I hadn’t put out a JJB blog in awhile. For those that don’t know- I live a double life,  bouncing from non profit medical research foundation to virtual biotech.  The last few months have been all about Phoenix Nest. Contracts, lawyers and grants- mind numbing stuff.  I don’t know what’s worse... reading over a sub-licensing agreement or trying to absorb the science in a research paper.  Mari has taken the lead with JJB. Meanwhile I take conference calls and pretend like I know what I’m doing.  I love Mari’s motto: “fake it until you make it.”  She’s so supportive.

Are you trying to imagine what I do as the CFO of a virtual biotech?  It’s mostly administrative stuff.  For instance, I manage the one grant that we have won so far.  PN’s scientists out in California orders research supplies, I review and approve these purchases, transfer the funds,  file the invoices and balance the checkbook.   Sounds like fun right?!  Sean does all the hard stuff, like traveling and setting up meetings. 

Sean has also been burning the midnight oil- writing grants.  We have submitted one of our grants 4 different times now.  The first three times, the reviewers made suggestions, we addressed their suggestions, then re-submitted.  Each time you submit a grant, it’s most likely a different team of reviewers, so what one group thinks might not be the same as the second review group.  It’s extremely frustrating.  The 4th time the grant came back with a score, albeit a low score, reading through the comments made my blood boil.   It was as if one of the reviewers hadn’t even read the grant. This time around Sean and I asked for a teleconference with the director.  We pleaded our case; the conversation went well, she understood and agreed with our grievances and is now taking our grant back to the table.  I have been warned that nobody ever wins a rebuttal.

PN is doing well.  I wish I could share with everyone our accomplishments. Another good saying "Loose lips sink ships."  So when you wonder why I haven’t blogged... I can’t justify boring everyone to death with legal speak, when I can’t even share the good stuff.

JJB is way more exciting and Mari’s been having all the fun.  Jonny Lee Miller is running  the Bear Mountain challenge again, 50 freaking miles (May 2nd)!  Mari, Jonny’s assistant, and crowdrise have been working together to create an awesome campaign.  https://www.crowdrise.com/jonny

The people at crowdrise are the best.  They came up with a bunch of suggestions of what we might be able to do for prizes.  Most of the suggestions were geared around Elementary.  Jonny and I were going through the list brainstorming what he might be able to get from set without having to go through a mound of CBS paperwork. Clothing was suggested and of course Sherlock’s socks jumped into my mind.  Like Ben, I’m obsessed with funky socks.   Jonny was like: “Yay man I can totally get Sherlock socks!”
Jonah home today sick, but some funny Sherlock socks cheered him up!


Yesterday I woke up to find a clear bag of socks on the table.  I just stared at the bright colored patterns, I thought Jeremy had gone shopping for Jonah on his lunch break. I hadn’t had my caffeine yet and didn’t realize that they were socks.  I pulled a pair out and started laughing. “Sherlock Socks” -hysterical.   Seriously, these socks are a must have!  We also have autographed posters, one of which is signed by the entire cast! Then we have an autographed chair back. Elementary wrapped yesterday.  The prizes will be perfect for the Elementary fans that will be jonesing for an Elementary fix.


FB Banner for your Home Page, grab it and help us raise awareness!
On the 28th Jonny appeared on the LIVE with Kelly and Michael show and on CBSN.com!  Our very own NY CBS anchor and JJB supporter, Kristine Johnson interviewed Jonny.

We raised close to $4,000.00 yesterday. On the 30th he’ll be on the Rachel Ray show. Rachel Ray made a $5,000.00 donation to JJB last week!!!!  She must have been quite moved by what Jonny told her.

Jonny NEVER ceases to amaze me, his knowledge of Sanfilippo is awesome, he sounds like a parent.  From the science to the compassion. We’re so lucky that Jonny gets it, not a lot of people are able to put themselves in our shoes, Jonny has.  He knows how close we are to a treatment, he’s got the will power and is determined to see our gene therapy go to trial too.  We’re in the home stretch now, for the last testing we need close to $750,000.  The number seems unreal to me, just a number.   We’ll do it, we have to do it failure is not an option.

FYI Oakley just donated another case of sunglasses in sponsorship for Jonny’s run.  You can get a pair of super cool glasses at a huge discount on our ebay giving works page.

http://givingworks.ebay.com/charity-auctions/charity/jonah-s-just-begun-foundation-to-cure-sanfilippo-inc/49803/

This month we were surprised and delighted by all the fundraisers that our friends held for JJB.  Our biggest fan in Germany ran her first half marathon for JJB!  Allison hosted a painting party for her Bday. Ms. Bucknel incorporated JJB into her schools spirit week. Jonah and I skyped with Ms. Bucknell’s school- when Jonah and I came into focus on their screen the school cheered. I was blown away by the energy of the kids. Jonah loved it too, the kids raised their hands to ask Jonah questions like...  “What’s your favorite color, favorite cartoon, animal? “  All questions that Jonah likes to discuss.   These fundraisers collectively raised over $2,000.00. 

I had an event planning meeting with South Slope Pediatrics this week. SSP is planning a kids day for JJB, the tentative date is July 18th, Brooklynites watch this space. I have been thinking about MPS awareness day and what JJB could do.  I asked something of Dr. Cao that was so outrageous, my face turned beat red, just asking him. I was inspired by Ms Bucknel’s school spirit week, where the kids paid to humiliate their teachers.  There was: leg waxing, body tattoos with sharpies, hair cutting,  egg throwing etc. All good stuff. 

Dr. Cao has agreed to dress up as either Elsa or a Teenage Mutant Ninja turtle and stroll down 5th ave. to our neighborhood grocery store. His patients will have a month to vote on the costume to be worn. Dr. Cao has been an absolute angel to JJB and this is how I repay him....  I feel kinda guilty but the image of him dressed up as Elsa overrides my guilt. He’s such a good sport! 

MPS awareness Day is May 15th and we’re asking you to wear your purple! 

One last thing- for our Brooklyn peeps, on May 30th JJB will have a table at PS10’s S.T.E.A.M. Maker Fair (Art meets science)  We’ll be making DNA bracelets, hosting a purple lemonade stand and selling JJB totes. Come out and see us!

Support our ongoing fundraisers: 
Jonny Lee Miller’s 50 miler 
Jennifer’s B.Day Wish.  
You can also create your own Purple Lemonade Stand- like Blue Barn Living is doing for MPS Awareness Day, May 15th!
https://www.crowdrise.com/jonahsjustbegunfound#projects

Coming soon Dr. Cao’s MPS awareness Day crowdrise page