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Tuesday, November 11, 2014

I went there today, don't hate me.

Read this with an open mind. In other words please do not take offense, my goal today is to raise awareness.

A few years ago you may remember JJB running in the ‘Chase Community Giving Challenge’.  It was a voting contest and the winner’s shared a pot of money, there were five payout levels.  JJB was in the 4th level and we won $20,000.  There were 50 foundations that won $20,000 each. JJB competed alongside the Bunny World Foundation and the Bat Conservation International Inc. etc.  The Lucky Dog Rescue Foundation won $100,000.  There were 35 competitor’s that took home $50,000 each.  Of those 35, 10 of them were animal rescue foundations.

I just can’t shake the feeling of indignity of these popularity contests.  Can I compare my son’s life to a bunny? No way. I don’t blame these foundations, the bunny’s need love too. But what does it say about our society? People blindly voting for frogs, when they could be voting for foundations, that are raising funds to create treatments for fatal pediatric diseases like Sanfilippo Syndrome.  Most people just don’t realize that there are 7,000 rare diseases, 50% of those diseases affect children and 1/3 of those children won’t live past the age of 5 years old. Furthermore there are less then 300 approved treatments for the 7,000 rare diseases.

My family is very fortunate that our friends and family get it. I personally have several good friends that are serious animal rights activists.  By knowing my family they have been educated on these stats.  They’re out there right now, rescuing animals and working hard to raise awareness about rare diseases. (thank you!)

How do we educate our entire society and make them aware that our kids are needlessly dying?  This is a question that haunts me.

 So when I saw the opportunity to work with a marketing firm that creates strategic campaigns for companies, I took it. This opportunity comes in the form of another voting contest. There are only 24 other not for profits competing in the voting contest.  We’re competing for $35,000 worth of free marketing advice and services from PM&CO.  I figured this would be a slam dunk for JJB.  But guess what?!  At this moment the prize is going to the dogs. You can vote here for Jonah’s Just Begun, scroll to the bottom to find our video. Please vote everyday until the 30th, you can vote from all your devices too.

Our society doesn’t put pictures of our sick children out in the media or sponsor infomercials depicting children dying of rare diseases. I agree... that would be in poor taste. But again I ask you how do we get the world to see what’s happening?

This article was in the Huffington post a few days  The title: Girl, 11 Dogs Rescued From 'Horrendous Conditions' (GRAPHIC PHOTOS)  It is absolutely horrendous! 

There is a poor blind three legged dog covered in matted poop.  We don’t see a picture of the rescued little girl.  We know nothing about her. Look at the pictures of the home that the girl lived in with the 11 dogs. It will enrage you.   But what about the girl?  Do you wonder how she is?  Her identity is protected, but I bet if you saw her, you’d want to adopt her, love her and nurse her back to health.

Now if people could visualize an innocent child, blind and immobile, struck down by a horrendous disease.  He/She is unable to control their bowl movements- parents wake up to find their child laying in poop. This is the reality of more families then you could imagine. But you don’t see it.  Our society would never splash those images for public viewing. 

What can we do to raise more awareness.  I have one answer. So I’ll leave you on a very positive note.

Three words 1 person, Jonny Lee Miller!  Jonny is doing everything he can to help us raise awareness for rare diseases.  Jonny is joining us at the Rare Voice awards in DC,  Jonny will be raising his voice, to bring much needed attention to our plight.  This is just what the rare disease community needs, more public figures and celebrities to stand up for us.  Our families can’t reach the masses like Jonny can. FYI for an actor to take time off during a work week to do anything personal is almost impossible. Even taking a sick day is frowned upon.  Scenes have to be re-written the work of the entire cast and crew is disrupted.  Jonny pulled a lot of string to get the time to help us.  Jonny’s conviction to our cause will surely get peoples attention.  Watch for the announcements on our FB and twitter feed.  #anythingispossiblebytheway.  Meanwhile please vote  Vote for JJB everyday until the 30th.

Respectfully yours,