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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