This week/month/year... no rest for the wicked.
Monday we kicked off the “Pay it Forward” campaign. The HS students at LIFE academy for Music and Film in Brooklyn has honored JJB, by asking us to be the recipients of their Pay it Forward campaign. The students at LIFE academy came up with a great idea to bring their community closer while helping others. The students are planning several fundraising events. They’re selling colorful paper hands (helping hands for Jonah), then placing the signed hands down their hallway at school. On the other side of the hallway the kids are placing paper bricks, creating a brick wall. On each brick the student writes a good deed that they performed. The choir is putting on a a talent show modeled after “America has Talent.” Their version “LIFE academy has talent” (view the event here) Many of the students will be sending out Cause wishes in honor of JJB-Helping Hands for Jonah. The HS students will present JJB with a check on graduation day. Their goal is drum roll please... $10,000! JJB set up a cause wish as well (view it here), to help them out with their ambitious goal.
Jonah and I were invited to give a presentation about JJB-Foundation to Cure Sanfilippo Inc. Jonah charmed 200 surly teenagers into listening and I humbled them with our initiative. It was a moment that none of us will forget. After our slide show presentation (view it here)the teenagers got to ask us questions. I was really nervous that the teenagers would ask things that I didn’t want Jonah to hear. Since Jonah was present I tried to keep the bulk of the presentation upbeat. I misjudged the students, many of them asked science orientated questions. In the presentation I tried to keep the science to a minimum. The students were great, they couldn’t have been more gracious. Several of the students were in tears. They immediately started buying hands from their own lunch money. So that was our Monday.
Tuesday.. I took Jonah back to the allergist. Jonah has had a runny nose all winter long, it has gone from a cold to a month long sinus infection, we’re on our second round of antibiotics. I was convinced that there must be mold in our apartment or that Jonah was allergic to our bedding or maybe it was something he was eating. So we went back and did the dreaded scratch test again, this time Jonah took it like a champ! I was so proud of him and very relieved myself. It’s awful having to hold him down while he screams and foams at the mouth. To my chagrin Jonah didn’t have any allergies. The doctor couldn’t believe it either. Deep down I knew it was Sanfilippo causing the excessive mucus production. I just hoped there was something I could do to control it.
Wednesday I attended a Venture Capitalist summit. There were a hundred + entrepreneurs that presented to a handful of VC’s. It was like a meat market at a dive bar, during the networking breaks the entrepreneurs stocked and drooled over the VC’s. There were 10 VC’s that I wanted to talk to and I only found four of them. They were very pleasant people and seemed genuinely interested in my company, now I have to get my business plan done. It just occurred to me that I haven’t announced that I created a “virtual biotech.”
Our biotech's name is called Phoenix Nest. It’s a for profit company, the idea is that as a biotech I can apply for federally funded grants and pitch our business plan to venture capitalists. With the grants I can continue to fund my scientists, with a VC as a partner we’d have the funding to pay for our clinical trial. The VC would take a portion of the proceeds of a commercialized drug that we’re hopefully going to create and find someone to manufacture. That’s the plan in a nut shell. Big pharma has forced our hand to create our own biotech, we can’t wait on pharma to decide if our treatment is profitable enough for them. :(
Thursday and Friday was spent: researching how to write a business plan for a biotech, filling out paperwork for our first business grant and brainstorming ideas for our upcoming events. I was really happy and felt like doors were opening up all over for us. Our project manager, Sean worked on our grant every free moment that he had. Alexey helped him write out the project that we’re asking funding for. The application process is almost 20 pages of forms to fill out plus the project itself was another 20 pages. All I did was provide Sean with our story and research, he put everything else together. He even wrote my bio. In the mean time Sean has a part time job, his own full time business and two young kids. Not all people are created equal.
Sean’s new start up is really cool. I’m looking forward to telling everyone about it. Sean has been traveling the country this past month, showing off the prototype of his new idea. Every meeting Sean has he uses JJB as an example of how open science has worked for us (view slides here.) Everyday a scientist finds us on twitter. I don’t know what we ever did to get someone like Sean to help us with the projects, which I could never have done on my own.
The start of this week has not been as good, in fact it sucked. Friday Jeremy worked all night outside in the rain. He got home at 6am and went straight to bed. When I looked in on him, he was burning up. He spent the entire weekend in bed. On Monday he tried to get ready for work. I heard him calling out from the shower, when I checked in on him well I’ll save you the visual. But he passed out just as I reached him, I flipped him over and he had a seizure. If I hadn’t heard him or been home he would have drowned. Jeremy is on the mend now he was has a virus and is congested. He passed out because he was dehydrated and in a hot shower. So that was Monday.
Tuesday was freaking crazy and stressful.
Sean put the finishing touches on our grant and sent it in. My responsibility for the grant was to get Phoenix Nest registered with .Gov., CCR and eRA commons (ignore the acronyms, they aren’t worth explaining.) Each one of these organizations electronic registrations was contingent on the first. Each organization had pages of forms to fill out. The sites we’re awful to navigate, a maze...you had to have a 6th sense to get through all of it. There was an error along the way and it all snowballed. Tuesday I spent all day on the phone getting the .Gov. and CCR portion straightened out, the operators were great, they sensed my desperation and overrode everything and pushed me through. phew... Then I got held up with eRA commons and had a mini meltdown, the operator wasn’t as nice and said: “that there are a lot of companies ahead of me in the same boat and there was no way she could expedite my application; which could take 2-4 weeks for the NIH to approve.”
I went ahead and got everything in for them. Then packed up all my paperwork and tried to accept the fact that I was going to miss my deadline. I was devastated, Sean and Alexey had worked so hard on the grant and I couldn’t get my part done right. :( I kept checking my emails for a miracle and it actually came! I got an email from eRA saying they were working on my application but they needed more info, after another two hours on the phone they excepted my application!! I went from waiting for a month to being approved in one day, seriously this can only be accredited to Divine intervention. This summary doesn’t even due justice to the situation, it was epic. I still can’t believe we were able to submit our application in time! Our deadline is the 5th. Fingers crossed we win this grant, we’ll find out in July. Sean is already planning our next grant for the August 1st deadline.
Today I took Jonah to the ENT. We scheduled his surgery for replacing the tubes in his ears. The one has only been out for a week and already his middle ear is filled with fluid. :( His month long sinus infection is finally cleared up and hopefully the summer weather will take care of the congestion. Otherwise Jonah is doing really well. He’s so happy and funny, cracking jokes all the time. His speech has caught up to be on point for his age! He has speech therapy 5 days a week and it has helped immensely! Jeremy and I marvel over him, everything he does is just soooo cool. He’s almost totally potty trained. I took him to the Time Square Toys R Us for his reward. I’ll have to post the pictures of the toy he picked out and wouldn't let go of. He dragged the huge box down Time Square, knocking out the tourists. Priceless.
I have high hopes for the rest of the week.
*** Phoenix Nest.. I’ll probably change the spelling to Phoinix, there’s another biotech named Phoenix Pharmaceuticals (after the city.) Anyhow the name came from my campaign to coin the term “Phoenix Parent.” The definition of Phoinix Parent would be described as a parent that is driven to find a cure for their child’s fatal disease. As you may know the Phoinix is a mythological bird that is said to have healing powers. They made their nest’s from Frankincesnse, Myrrh and spices. So in essence the nest is a pharmacy. Then there is the symbolism of the actual nest, a place where we raise our children. We all hope to raise them happy and healthy and some day they will leave the “nest.”
