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Monday, October 24, 2016

This is for real

Sanfilippo is a disease that’s not going away, kind of like Trump, ba-dum-bump.  This won’t end for me until we have a treatment for Jonah or he dies. Which will come first?  I’m working like mad to ensure that a treatment comes first. It’s what I do all day everyday, no relaxing vacations or weekends off.

I'm not opposed to shock value.  You can learn a lot about about a person by the look on their face when you drop a verbal bomb on them.  I only do it when I want to see what you’re made of.  Or sometimes if I just don’t like you and want to make you feel uncomfortable. I despise rubberneckers- turn on Jerry Springer, or pick up a tabloid, you don’t deserve to hear my story.

This morning I was again reminded of how little time Jonah has.  Another little boy passed away last week, Russell.  His little sister also suffered from Sanfilippo. On the day of Russell’s funeral services they were interrupted by the passing of his little sister. 

I’m coming off callous, or is it shock value, it's just brutal honesty.

Do YOU have what it takes to help?  Do you even want to help?  Are you willing to wager that something like this will never happen to you or your family? Guess what?! There are 7,000 rare diseases affecting 1 in 10 Americans.  Half of those diseases affect children and a third of them won’t live past their 5th birthday.

If you have already been hit with your fare share of loss, you have my heart felt condolences!  I feel your pain.  There is war, terrorism and just freak accidents.  We can’t control that. Or maybe we can… Think wisely before electing. My point, we CAN create treatments to end diseases and save our: children, parents, cousins, siblings and BFF’s.

Here is what you can do- go buy a lottery ticket or donate to charity. Your odds of helping to create a treatment are better then winning the lottery.

FYI I can’t stand it when people tell me what to do! These days, everyone is walking around with a T-shirt slogan suggesting how you should live your life:  Eat, Sleep, Pray.  Love, Yoga, Rest. Coffee, Bicycle, Repeat.  I want to say to these people: “Wow you must have the easiest life in the world- to do just three things all day!"   " What I wouldn’t do to be you!”



BTW I was just being dramatic when I said I’d stop if Jonah died.  I’ll never stop, there are too many families that need us.  Go here to be a team member and raise a few bucks for life!  But don't let me tell you what to do.   https://www.crowdrise.com/save-me-from-mpsiii/fundraiser/jonahsjustbegunfound Link it to JJB’s  fundraising page “Save Me from MPS III”
The fundraising for “Save Me from MPS III” does not open until November 22nd, Giving Tuesday.  This gives you a bit of time to make the most compelling plea for donations possible.  Check out the one that my sister Jennifer did.

When you’re done creating your team member profile, you can reward yourself by looking at this album.  See how far JJB has come to creating a treatment for our kids.  Thanks to you  (not the rubberneckers) we're getting ready for clinical trial.

https://www.facebook.com/jonahsjustbegun/photos/?tab=album&album_id=1318052388205357

October 13th, at Manchester University, Brian Bigger's lab.  That's Claire our post doc, Brian and me, trying to be funny with my hood up. I ain't afraid of no ghosts. Just my child dying.