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Sunday, July 16, 2017

Bring it on!


Bring it on... I'm waiting.

I have a wall of inspiration. It’s aggressive, powerful and motivating. It used to get me moving in the morning. Today I stood and stared at my to-do list; scribbled on the dry erase board.  Bored of it all. I just want my ultimate desire to come to fruition.

I’m waiting.  When you have something that is so heavily weighing on you, It’s hard to do anything else but wait. What do you do when you’re waiting? I feel like I'm sitting at the DMV office.  I can't wait to get the fuck out of here, but I need my license.

What do you do when you're waiting? I have already binge watched Breaking Bad and just finished King of Thrones. After several recommendations I tried watching Handmaids Tale, I hated the book.  I found the show to be even more annoying. Once an avid reader, I can’t even fathom picking up a book now. I’m getting my Phoenix tattoo colored in tonight, that’s another three hours killed. I got a tattoo of a chainsaw on my forearm last month. It makes me smile. For downtime these days, I chase Pokemon at the cemetery. 

I have been working... but it all feels like busy work.  I have a dozen or two irons in a ROARING fire, many others have been stoking it and I feel the heat.  It's good that  people keep probing me on and in return I probe the powers that be. I explain: "It's not just me!" 

I attempt to get excited about all the ‘small’ accomplishments that we have won.
We're here now, our accomplishments have added up.  A pharma employee commented on my last blog he said: "Wow! Congrats Jill! What amazing efforts - large companies would be hard-pressed to accomplish a fraction of this. You rock"

Once our drug goes to trial it will take a few years from trial-approval-commercialization. They call this 'bench to bedside' onto jumping the 'valley of death.' Sometimes your drug gets picked up immediately after FDA approval, other times it just sits there. No takers to bring your drug to commercialization, this is the valley of death.

Today I cleaned out all three of our AC units.... DISGUSTING! Meanwhile, Sean wrote me an abstract for a poster presentation for a conference in Brazil... Hey, at least I made a couple of edits and submitted it. I also had a couple of conference calls today and I followed up with my action items. I keep plugging my way along. Waiting for something awesome to happen. The enthusiasm for my B.day wish was a turn on and a break from the norm. Thank you all for donating!  Monster Mash will for sure be a blast and should turn my focus to this gig as it is uplifting. 

We just got home from the west coast visiting family.  The only overlap that Jeremy and Jonah both had off. I offered to go anywhere with them for vacation, Jeremy just stared at me. He responded calmly: “We’re not spending any money on an exotic vacation, because I know you won’t be able to stop yourself from working.”

This summer Jonah and I will be landing, taxing home, repacking and heading out again. 

I did well in Oregon, just a few breaks here and there on the computer and phone. We hiked the pacific trail, went to Seattle to visit the cousins, made smores, celebrated July 4th  with friends from NY doing the root 66 thing. Jeremy’s major goal was to canoe, my aunt granted that wish and brought down her canoe…  we all paddled up and down our river. Jonah did an awesome job and fully enjoyed himself. Jeremy found himself using some major clichés: “Jonah, don’t rock the boat.” “Jonah don’t drop the paddle, we’ll be up shit creek, without a paddle if you do.”

Jennifer and I leisurely paddled alongside them on our floaties. Scaring the schools of fish, freaking out the crawdads and annoying the cranes.  A red tail hawk made sure we knew he was there. 

 I’m back in Brooklyn working, Jeremy and Jonah are now upstate at the-in-laws. Elementary starts back up next week.  Jonah and I will be working the Canadian MPS family conference next week. We have a booth representing the ConnectMPS.org patient registry, I have a panel talk along with the esteemed Mark Dant and Elisabeth Linton. These are the folks that inspired Jeremy and I to follow the same path.

It’s an immense honor to be sitting side by side with my heroes and I’m really looking forward to it.  The Linton foundation SCRF, http://www.alifeforelisa.org/ is one of the three founding foundations for MPSIII.  SCRF gave funding to Alexey Pshezhetsky, before Jonah was dx’d wich allowed Alexey’s lab to find the affected spot on chromosome 8 that causes type C. We are forever in their debt. Sadly Elisa (pronounced Alyssa) passed away last November. The Abeona and BioMarin trials for MPSIII B had just started, Elisa was not eligible for the clinical trials. Trials that were inspired by Elisa and in part funded by SCRF foundation.  Mark Dant's son Ryan lived to see his parents crusade for a treatment come to fruition. Ryan’s treatment is not perfect and we still work for the silver bullet. In the mean time Ryan has graduated from college! Please watch this powerful episode and know that this could be Jonah’s future too. http://www.cnn.com/2017/05/12/health/ryan-dant-college-graduation-mps-rare-disease-profile/index.html 

It’s hard for me to call this a miracle… Because I know how hard Ryan’s parents worked to make this treatment a reality.  The miracle is that Ryan lived to see it.  Another powerful message from my friends the VanHoutan’s, they lost one child to a similar syndrome as Jonah, Batten disease. The VanHoutan family helped make treatment happen for those that follow in Noah and Layne’s footsteps. http://www.chicagotribune.com/news/ct-batten-disease-drug-met-20170707-story.html

What is in Jonah’s future?  I can’t tolerate thinking about it. I’d rather sit through three hours of a tattoo, rather then mentally take myself down that road. I had an emergency root canal this past month that hurt and after 5 visits it was finally resolved yesterday. I’d take a root canal and a tattoo everyday for the rest of my life over losing Jonah. Picture that. I’d have to tattoo over tattoos and replace crowns for the fun of it. So maybe that’s not a good comparison. But that’s the patients and pain that I would endure to see a treatment through to the end to save Jonah and or the next generation.

July, 30th is Jonah’s 9 Birthday, while in Oregon Grandma Wood had a surprise B.day party for him . We were having dinner out on the patio, Grandma and Aunt Jennifer whipped out a banquet table, dressed it and overloaded it with presents. Jonah watched everything come out. He backed up into my lap and whispered: “Mom, who’s B.day is it?”

He sat on my lap spell bound not moving an inch, as if he flinched the mirage would disappear. Once everything was in place Jonah moved into position with no hesitation or prodding. Loving every present that he opened for a moment.

He has asked several times since then if he’s 9 now?  He’ll be getting another party at Jeremy’s parents this week. I still need to plan his party with friends in Brooklyn. I wonder if he'd notice if he didn't get a friend B.day party on his B.day? I hope next year he automatically anticipates three B.days.

I applied for a new school for Jonah. Have no idea if we will get in. Back to School will be here in a flash. Fingers crossed he gets in.
Public school vs Private school

WE NEED YOUR HELP!

It's super easy, don't be lazy or tell yourself: "I won't be able to make a difference."

Listen to me and watch Jonah thrive, because people helped.

Everyone and their dog shops at Macy’s.  Even more so since Trump black listed them for not carrying Trump products, lol.  Politics aside.

Back-to-school will be here before you know it. Please act now to help JJB earn cash for our clinical trial.  For every $5 donation people will earn a savings pass up to 25% off at Macy’s. I take that back, NYC parents make it a point to not go to Macy’s, it’s an insane tourist trap in the heart of the city. For my NY friends please shop Macy’s online.

I have two asks, take your pick or pick both and earn extra credit.
1.)  Create a profile and join our team, share through social media to All your friends emploring them to donate at minimum five dollars and earn a 25% off Macy’s shopping pass.
2.)   Or you can just donate to our team
3.)  Extra Credit- Do both and help us win up to $100,000 in cash prizes.

·      Create your profile
·      SHARE SHARE SHARE. Tell everyone about JJB’s plight. Tell them that orphan bats have raised more $$ then terminal children.