War of My Life – A Long Awaited Update

Hi Everyone,

Thanks for the patience.  I know there have been many of you wondering what’s been going on with our latest project, #ProjectOneMillion, and if things are progressing.

Since we launched our project, a lot of developments have happened, and things are moving forward (although not at the pace with which we want or expect).  So…I’ve decided to take a minute to give you a rundown about where we’ve been, where we are, and where we’re going!

Initial respose to our #ProjectOneMillion video (http://www.youtube.com/watch?v=iPhisB8_-wM) was incredible.  We quickly raced up the charts on YouTube and had 5000 views.  This was before the push actually began for us to get it trending!  As you know, the drug company that we need to sign on board with us, Johnson and Johnson, the maker of the drug that or children desperately need, was initially hesitant to help us complete the clinical trial for our kids.  After the video launched, I reached out to J and J and began discussions to see how we could obtain their support moving forward.

Well, as things tend to do in the pharmaceutical world, things progressed – but progressed slowly.  J and J agreed to have a teleconference with our Researcher and their medical advisory team.  Our lead physician was also scheduled to be on board.  However, due to numerous scheduling conflicts (and other unmentionable delays!), the teleconference got bumped from September, to early October, to late October, to today.

In the meantime, two other major pharmaceutical companies began a push to develop their own version of the drug that our kids need.  On the surface, this seems like cause for excitement.  However, it’s the farthest thing from exciting.  These companies want to take the current form of the drug and make it into a different form, something that is not in the best interest of our kids.  In addition, because they are creating a “new” treatment, it would have to be approved by the FDA (the drug from J and J is already approved).  As well, this “new” drug would have to go through the development stage, the early clinical trial stage, the late clinical trial stages, etc.  This is a very long process, and it’s time that our kids don’t have.  Finally, because this “new” drug would be considered a treatment for a rare disease, the drug company would gain market exclusivity on the drug for 7-10 years.  This means they can also set whatever price point they want – and this price point would be sure to be ridiculously high (current prices for rare disease treatments rank as some of the most expensive drugs in the world).  Again, this is not in the best interest of our children and will be a barrier to a great many being able to even attain it.  In the end, if one of these two drug companies are successful in creating their own drug, it could be upwards of 6 years before we see it in our children, and it will be incredibly expensive (I gauge these companies could end up making a billion dollars on the backs of our very ill children).

This leads us to today and our teleconference with J and J.  While I cannot share any details, I do want to impress on all of you that are interested, our very real determination to ensure that the drug currently being made and marketed by J and J ends up in our children in very short order, and our very real battle to prevent these other two companies from marketing their own drug.

Why is J and J the best option?  First, it’s already available and already FDA approved for use (and approved for use here in Canada as well).  This availability is paramount to ensure our kids can start their treatment early.  Second – it’s in a form that will allow our children to easly access it’s benefits (i.e – not a needle each and every day).  Third, it’s affordable.  So affordable that drug plans will not even question the cost to them on a yearly basis.

To be clear, we have the team in place to begin a trial immediately.  We have the data (which is incredible), we have the lead physician to run the trial, we have the location and are working on the parameters.  All we need is the ability to cover the cost – 1 million dollars.  My hope is that J and J can come through with help, and you’ve all done so very well in helping us so far.  But we have to get going soon, or one of those 2 drug companies will get their own form of the drug production under way, and our kids will continue to suffer needlessly as they wait for another million dollar treatment to become available to them.

So…there you have it.  I promise, I haven’t been sitting idle since the launch of our Project.  I’ve put off media interviews and my media release, but they are hounding me to chat with them because this is such a big story.  We won’t put them off much longer.  And when I chat with them, I hope I have good news to pass along to them 😉

My hope is that J and J will understand what incredibly good things they can be doing for our childern suffering from rare diseases throughout the world.  My hope is that they will understand the need for their product to go into immediate trial in our kids, and that they will work to block the other two companies trying to make hundreds of millions of dollars off of our kids.

And my hope is that you’ll continue to help us along the way.  There’s work yet to be done, and our kids will need you.

Till I can update again, thanks for your continued support.

With Love,

The Isaac Foundation


Driving the hour and a half to school this morning, I put my iPod on random and just let my music play whatever it wanted.  It was lovely being surprised about what song was coming on next and made for a relaxing trip on a dreary Friday morning in Ontario.  A lot of what came on was upbeat and fun and I enjoyed my journey.  The last song that came on before I arrived in Kingston wasn’t a song at all – it was the sound of my own voice calling out from the speakers and announcing that I had Isaac and Gabriel with me for a bit of fun with the microphone.

My face immediately lit up – I’d forgotten that we used to play around recording ourselves when the boys were little.  Listening to them made my morning – my week, really – and took a bit of the stress I’ve been feeling lately down a few levels.

2012 has been a hard year for us and I feel like we’ve been treading water, just trying to stay above the surface long enough to survive.  Isaac’s health challenges have taken a lot out of us, fighting for Violet was exhausting, and the unknowns that are left with Project One Million is both stressful and Hopeful at the same time.  And just when I’ve been feeling like the tank was running on empty, the voices of my beautiful boys came singing through the speakers in my car.

Our Gala takes place in a week – and our teleconference with Johnson and Johnson takes place 2 days before.  We’ve been struggling to get there – weighed down by everything that’s on our plate.  Incredibly stressful doesn’t begin to describe the process involved with Project One Million – we think about it every moment of every day.  What happens if we don’t succeed?  What happens if we do?  Listening to my boys this morning gave me that moment of clarity I’ve needed going into this final stretch.  This is exactly what Project One Million is all about – giving my son the shot at life he deserves, and giving everyone else suffering from this disease that same chance.

Isaac singing into that microphone this morning showed how innocent, how loving, how truly incredible he really is.  He’s a little boy fighting a battle that we can’t imagine, and we have to help him win it – whatever the cost.

As we head into our Thanksgiving weekend, I’m reminded how truly thankful I am to have Isaac and Gabriel, and my lovely wife Ellen, in my life.  I didn’t really need to hear that recording this morning to remind me, but it was nice to have those voices nudge things back in order for me.  Stress?  We can do this.  Johnson and Johnson next week?  We can make it happen.  And our Gala?  It will be a celebration worth remembering, to be sure!

Project One Million keeps going.  For Isaac.  For Jasper.  For Violet.  For Trey and Case and Justin. For all of those kids out there suffering from this disease – we’re going to fight and win.

Enjoy listening to this gem I found this morning.  I hope it gives you as much pause as it did me, and I hope it gives you a moment to find some perspective in life.  Listen Here! – Gabriel and Isaac – November 19 2007

Happy Thanksgiving.

With Love,