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Monday, December 15, 2014

Just say No!

The prologue: 
3.) Crowdrise: Crowdrise is a charity fundraising site.  From now until December 31st, they are giving out several cash prizes.  December 16th, is a special contest day, the charity that receives the MOST donations of any denomination will receive $10,000!  The catch do not donate until 2:00pm ET on the 16th, that’s when the contest starts. That’s 11:00am on the West Coast and 7:00pm for most of Europe. You can make your donation(s) from the 16th-23rd.  If you’re reading this on the 16th after 2:00pm ET, go here now and donate ANY amount! Please. :)
http://bit.ly/jjbnycure
Do I sound bossy?  If so it's just Jonah rubbing off on me.


The Blog:

Just say No!  My new motto and let me tell you saying NO is empowering!  Say NO to Jonah's I-pad say and just say NO to running myself ragged.
  
Every Monday I wake up ready to storm the castle. By Wednesday my plate fill’s up with tasks that weren’t on my current week to-do list.   By Friday I’m close to a nervous breakdown.

Over the weekend I bang out the items that I started the week out with.  Jeremy takes Jonah on all day outings so I can clear my plate, just to start over again on Monday.  This is no way to live.  I tell myself everyday it’s going to get better.  But the reality is...  it’s only going to get worse, by that I mostly mean busier. Jonah’s progression is a different kind of busy. :(

Jonah has been having a really hard time at school.  Throwing 20 minute temper-tantrums, hiding under the desk, foaming at the mouth. When he’s not loosing it, he’s playing class clown, tickling his friends, making jokes, farting and laughing. Disrupting everyone else.

We’ve once again been thrown into panic mode. At Jonah’s recent psychiatric appointment, I let him bring the I pad. He watched it while the doctor and I talked.  I told the doctor how awful the I pad was, for all of us.  It’s a double edged sword, great for when I need to make an important phone call or respond to an email.  Then when I’m ready to play with him, I can’t get him to turn it off.   The doctor, point blank said: “Get rid of it.”  He went on to say- that even for a typical child, the electronics are over stimulating.  The electronics cause a child to loose their focus, their attention span goes out the window.  Everything else just seems boring compared to the Pad. So I devised a plan to get rid of the it.

On the train ride home, I let Jonah watch the I pad for the last time.  When we got to our stop and Jonah rushed out the door, the I-Pad "accidentally on purpose" got left on the train (I snuck it in my backpack while he wasn’t looking.)  You should have seen the look on his face, when he discovered that the I Pad was not in my backpack.  It was as if everything that he knew and loved vanished from his life.  We had to call the police and ask them to search every F train (I called Jeremy.)  Jonah waited by the door for a few hours hoping that the police would come with his Pad.  The police i.e. Jeremy finally called, they looked and looked but didn’t find it. 

Jonah is still in morning, but it’s really not that bad.  He tells me once or twice a day that he wants the police to catch the bad guy that took his I pad and throw him in jail.  The next day at pickup, his teachers eyes were as big as saucers, she said that Jonah had had a great day! No temper-tantrums and almost perfect focus.  FYI we also up’d his dosage of Vyvanse.  At home the temper-tantrums have gone from a raging boil to a little simmer.  I'm so so happy, knock on wood he's stabilized.

Our gene therapy trial is not far off now.  We’re moving into the last stage of testing, we will be looking at dosage and toxicology this Winter.  For the squeamish I won’t describe what that entails.  JJB and our HANDS consortium will need to raise an estimated $500,000 over the next year, to support this last phase before trial.  We’re then hoping that we will win a grant to cover the expenses of the clinical trial.  This year three children were diagnosed: a baby, a 1 year old and a two year old. I think we will save these babies...  think on that. Profound isn't it.

So how are we going to raise this $500,000?!  Hmm, well I hope that JJB can raise $300,000 this coming year and hopefully our 4 other HANDS foundations can raise the other $300,000. Sounds doable right!  I have faith that our supporters will help us make it happen, you all haven’t let us down yet. Now we’re in the home stretch! 

Right now, JJB is focusing on a few online contests and we’re building our virtual stores.    We need everyone to help in getting the word out.


Here's a list, get involved.  Cut & Paste, share with your people.

1.) Amazon Smile: Instead of using Amazon, use Amazon Smile, it’s the same thing. Go here /https://org.amazon.com/ and select Jonah’s Just Begun.  Every time you shop, JJB receives a small portion of the sales. It all adds up!

2.)  eBay Giving Works: Right now until the end of the month you can opt to “follow” JJB on eBay Giving Works.  If JJB has the most “new” followers then we can win $10,000!  Follow us now ebay.to/HMUigv  

3.) Crowdrise: Crowdrise is a charity fundraising site.  From now until December 31st, they are giving out several cash prizes.  December 16th, is a special contest day, the charity that receives the MOST donations of ANY DENOMINATION will receive $10,000!  The catch do not donate until 2:00pm ET on the 16th, that’s when the contest starts. That’s 11:00am on the West Coast and 7:00pm for most of Europe. You can make your donation(s) from the 16th-23rd.  If you’re reading this and it’s past 2:00pm on the 16th-23rd, go donate any amount, please. :)  http://bit.ly/jjbnycure

4.) Etsy:  We have lots of fun gifts on our Etsy site.  All the products have been generously donated from friends and families.  We’re having a super Holiday sale now. Check it out.  These gifts keep on giving, your purchase supports life saving medical research.https://www.etsy.com/shop/JonahsJustBegun?ref=em

One day soon babies born with MPSIIIC will live, because of your generous donations made now.  Please pass these links onto all of your friends and families.

In other news.  Did you know that Jonny Lee Miller joined me and a few 100 other patient advocates in Washington D.C.?  Yup that’s right, on October 16th, Jonny joined us at the EveryLife Foundations: “Rare Voice Award” ceremony. Jonny had the special pleasure of passing out the beautiful and symbolic “Abbey” award to members of congress and families affected by rare diseases.  These individuals were honored for going above and beyond, to change legislation that focus’s on: treatments for rare diseases, newborn screening and support for families affected by a rare disease. 

Jonny was visibly moved by these individual stories and heroic efforts to make the world a better place. In turn we honored Jonny for his efforts to persuade our countries legislators to take notice of our plight and to help us in our fight.  Last February on rare disease day, Jonny spoke at a rare disease caucus briefing on the importance of supporting legislation that would lead to treatments. You can watch his passionate speech here. https://www.youtube.com/watch?v=jjW8grqwT-c&list=UUL155EYAyLhYiPe-a1PbXTwhttps://www.youtube.com/watch?v=jjW8grqwT-c&list=UUL155EYAyLhYiPe-a1PbXTw

Jonny turned to me and said: “ He didn’t feel worthy of such an honor, after hearing and seeing the accomplishments of the other award winners.”


I assured Jonny that he did.  I'm not sure if it fell on deaf ears or not.

Jonny has bent over backwards to help our cause.  It’s not easy for a working celebrity to take time off during a shooting season. Jonny has: prepared speeches, listened to our community, educated himself on rare diseases, implored congress members to help us and he has done it all out of compassion for those suffering from horrific syndromes, like Jonah’s.  His selflessness is not something that many individuals posses.  Not to mention the fact that he has ran 100’s of miles to raise funds for our research.  He has also taken time out of his busy schedule to appear on several news segments.  See for yourself, a montage of Jonny as a rare disease advocate. https://www.youtube.com/watch?v=xF5RLaFQr3Q&list=UUL155EYAyLhYiPe-a1PbXTw

Jonny had to leave right after the ceremony, he took the last train home so that he could get to work in the morning. Almost everyone at the gala came up to me to tell me how appreciative they were to have Jonny standing up for them.  They were in awe that he came and very much moved by Jonny’s obvious conviction to helping our cause. It was a really very special evening and I wish Jonny could have heard their thanks.

Happy Holidays everyone and thanks so much for all of your generous Holiday Remit donations. I breathe easier finding our P.O. BOX filled with donations. With your help we will be able to do this. #anythingispossiblebytheway