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Sunday, July 12, 2015

Whoever said....



Fundraising is easy... Said no one ever!



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Jonah's Just Begun and South Slope Pediatrics are hosting a super fun kid friendly fundraiser.  As this fundraisers 
focus is to raise much needed  funds to support a clinical trial for the ultra-rare terminal pediatric 
disease, Sanfilippo Syndrome.  

This Hawaiian themed fundraiser is jammed packed with fun for the whole family!
 
Kids will enjoy: 
Hula Dancing (with professional hula dancers) 
Rollerskating VIP Passes Splash-pad 
Face Painting
Parents can relax at our reserved tables, enjoy the full luncheon provided, 
(adult  drinks are served one door down at the cafe) and peruse the must-have silent
action items donated by Park Slopes finest businesses.   

Some of the auction items include: 

VIP Tickets to a Rachael Ray Show taping 
Oakley Sunglasses 
NY Kids Club: 10-pack of Pajama Parties 
Restaurant Gift Certificates, and much, much more. 
Original works of art, from local talent!

There is limited space available, so get tickets for the whole family now!
'Luau at Lakeside' http://bit.ly/Luau4JJB 
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Planning a big or medium sized fundraiser is like planning a wedding, non-profits get married once or twice a year.  You'd think it would get easier after awhile, but it's always a new venue, caterer and theme.  It makes my head spin:  Promotion,  Invites, Venue, Food, Decorations, Volunteers, Sound Equipment, Entertainment, Set Up-Take Down, Speeches and M.C.  Most importantly getting people in the door, so you can pay for all the overhead and hopefully raise a few bucks.  The party planning curse.... everybody waits until last minute to purchase tickets or RSVP.  I know I'm guilty of that too!  It never seems like the right time of year to have a fundraiser: it's either wedding season, summer break, the Holidays, back to school, spring break or the dead of winter.  But when is the right time?! Everyone seems to have a different opinion.

The actual event ALWAYS turn out great, myself and organizers are the only ones that know what has gone on behind the scenes.  There was that one incident where the caterer at one of our wine  events totally screwed us over.  Charging 2,000 dollars for food that she picked up at Costco and tried to pass off as home made. Disgusting-  frozen Tyson's chicken balls, store bought vegetable plastic trays, hummus and pita bread and melted Costco dessert trays.  She didn't even stick around to setup and serve.  Fortunately this women went out of business.  I have absolutely no sympathy there.  I went bridezilla on her, there are only a handful of times that I have let loose on someone I barely knew.  She didn't just rob me, she robbed our kids, $2,000.00 goes a long way. 

My Mom isn't in NY to do everything that I wouldn't have thought of doing (ironing table cloths.)  Fortunately we do have an awesome planner- Jen who came to us courtesy of South Slope Pediatrics.   Jen has been doing much of the heaving lifting.  We also got lucky with some awesome sponsors:  Every Life FoundationWestern Beef and ENT and Allergy Association We had lots of friends jump up and volunteer to help setup and work the event.  I'm watching Jonah watching Sunday morning cartoons, he's laughing his butt off and I can't help to laugh with him.  Jonah makes every minute of this worth it.  It's an honor really to be doing all of this work.  Yesterday was our friend Levi's 17th Birthday; the 30th of July is Jonah's 7th Birthday. This is why we work so hard... to see our kids celebrate another Birthday.

Jonah thinks our 'Luau at Lakeside' is a big work party, he has know idea that he's sick. :) The event itself is very kid friendly and it makes me nervous to drop Jonah into the middle of it.  I won't be giving a speech on the effects of Sanfilippo Syndrome and how it affects children like Jonah.  Not in front of Jonah's peers.  'We' as in Tim Burr and I created this quick one take video to inform the adults that are attending the event https://youtu.be/er5r2BzLHUo

One of our local neighborhood bloggers did a story about the event and did a really nice job on touching on our desire to protect Jonah but also raise awareness.  It's a double edged sword that we constantly struggle with. http://southslopenews.com/blog/kids/jonahs-just-begun-familys-tireless-journey-save-son

Julia Jenkins from the Every Life Foundation is coming out from California and will M.C. the event.  Julia will talk to the importance of driving the science through fundraising an influencing our legislators to pass bills that will help expedite clinical trials.  I hope the takeaway will be that everyday people can be heroes and help save lives and change legislation.

 For those of you who follow to keep up with the science I want to share this recent paper with you.  It's absolutely amazing.  A study to learn about retina pigmatosa, lead to a discovery that a few retinis pigmatosis patients actually had the disease because they had MPSIIIC mutations, but were for the most part asymptomatic of Sanfilippo disease, the only Sanfilippo symptom they had is retinis pigmatosis!  Their mutations are so mild, that they lead normal lives.  This article will hopefully help us understand the amount of enzyme that an MPSIIIC patient can live off of without having the disease.  Jeremy and I are both carriers, theoretically we're  creating 50% of the enzyme HGSNT and we're fine (well that might be debatable, I definitely have behavioral issues and Jeremy is really hairy)...  But these patients actually have two copies of the mutation  and their cognitively healthy.  This is huge!  I can't wait to find out more!!! http://www.ncbi.nlm.nih.gov/pubmed/25859010

On a side note, we just had Jonah's annual physical exam and he didn't do well on his visual exam. :( I was really surprised that he couldn't read the letters, he could last year.  I immediately made an appointment to see our optometrist. I received this paper just a few days ago.  Fingers crossed.... that Jonah isn't suffering from RP, but something is up.

Hope to see all our locals at the Luau.  Don't be the last person to buy your ticket! http://bit.ly/Luau4JJB

Wednesday, July 8, 2015

Game On!



The 26th was Jonah’s last day of first grade!!  This milestone is a reminder to us that Jonah is getting older and we still don’t have a treatment to halt the disease.  Believe it or not on his last day, I wasn’t overcome by fear, depression and panic.  Jeremy and I are both very much aware of what we’re facing and despite that we were happy.  Happy for ourselves and very proud of Jonah. Jonah is beating his fate.  Ok so he failed every subject, but he’s still actively learning!  Jonah appears to be getting better rather then worse.  His health is better, his behavior is much better, he shows a great interest in math and reading but hates writing.  He’s a social butterfly.  Five years ago when we received the diagnosis, we were informed that Jonah would have profound brain damage by the age of 7.




On Thursday, Jonah and I were at the playground until the sun went down.  Jonah had hooked up with a couple of school mates and the three of them joined in on another families game.  I had never seen these kids before, the dad was teaching them the rules to a hand ball game. All the kids but Jonah listened intently to the instructions.  Jonah stood back and picked his fingers staring off into space.  I wish I knew where his mind goes when he does that. When the game began, Jonah eagerly awaited his turn.  Not knowing what it was he was supposed to do, he fumbled through his play.  The dad patiently walked Jonah through the rules again. Yes!  Go stranger dad!

The new families mom showed up, I knew the women but couldn’t place her.  She sat down next to me and asked how we were doing.  Her shirt had the logo of Jonah’s camp on it and I remembered, who she was.  She said: “I hear Jonah is coming to camp again next year?!” 

My stomach cringed, this is the lady that had a sit down with me about Jonah’s behavior, last summer.  I wanted to run and hide.   Jonah had had a couple of really bad temper tantrums at camp, that threw everyone off their game.  I braced myself for an awkward conversation.

She surprised me by saying that she pulled Jonah’s camp leader from last year and brought him up to the older kids camp so that he could be with Jonah again.  I just about burst into tears, I was so grateful, not everyone gets it-she did.

In Jonah’s defense, the temper tantrum that really rocked their world was at Adventurer Land.  My bad, when I saw on their schedule  that they were going to Adventurer Land, I didn’t know what it was and I didn’t look it up (lesson learned). After the ‘episode’ Jeremy and I went there with Jonah.  When we saw the place, we shook our heads... Oh man- this is crack central for Jonah.  A mini amusement park for little kids. Jonah of course did not want to leave the amusement park, it was time to go, they were on a schedule and Jonah had gone boneless on them.  They can’t physically pick a child up and throw them into the bus (as I would have.)  Everyone there would have whipped out their Iphones and recorded the event. They had to wait out Jonah’s temper tantrum.

Jonah is going to rock this year at camp!  I’m not even slightly nervous about it.  Last year I worried all day, I jumped when the phone rang.  Assuming the worst.  I doubt I’ll get any calls this summer.

The director commented that Jonah looked healthy and happy.

Jonah is progressing forward, we see no signs of regression. Why? Why, is Jonah doing so well?!  We don’t know exactly and we will probably never know.  Maybe the ‘novel’ mutation that Jeremy passed on is doing something that we don’t understand.  Jeremy’s mutation has never been reported before.  That isn’t as esoteric as it sounds, the ability to identify these mutations is a new technology.  The mutation that I passed onto Jonah is well documented and is considered mild.  Maybe the genistein is helping.... Most certainly Jonah’s early diagnosis has played an integral role in Jonah’s case.  When Jonah was first diagnosed one of our geneticists said: “Jill, Jeremy, do you think you can tread water for awhile?”

We’re still treading water, but we can now see land. Our first treatment (gene therapy) is $750,000 away from going to trial.  The faster we can raise the capital the faster Jonah will get his ‘forever fix.’  At this point money is the only thing standing in our way.

JJB and South Slope Pediatrics are in fundraiser mania mode right now!  Seems that everyone is out of town, but we’re committed to pulling off the coolest gig at LeFrak that anyone has yet to have seen.  Get your tickets now! PURCHASE TICKETS NOW The first person to purchase four tickets to the event will receive four complimentary tickets.  Just write in the subject line:  “heard it in Jill’s blog.”  Disclaimer:  you must be the first person to make that purchase!  We will be in contact to get the names of your four guests. If you try but don’t succeed to be the first person, we’ll let you know and give you a big ‘thanks for trying hug’ on the day of the event. Good luck!