2014 Research Grants

research-grantsThe Isaac Foundation is pleased to announce two research grant opportunities with a call for a $100,000 grant through our general MPS Fund and a call for $50,000 from our MPS II Research Fund.

Last month also saw us renew a research project for $50,000, bringing our total research grants from The Isaac Foundation early 2014 to $200,000!

We continue to be proud of the work that we do in the MPS Community. To date, we are well over 1/2 million dollars granted to research projects throughout the world and we will continue to grow and support innovative research until a cure for MPS is found.

Calls for Applications to these grants will be issued soon.

We are also very pleased to announce that Dr. Barbara Burton and Dr. Paul Harmatz, both world-renowned MPS specialist from the United States, have joined our Medical Advisory panel to review and advise on research applications as they come in. Dr. Burton and Dr. Harmatz join Dr. Julian Raiman and Dr. Joe Clarke to round out our 2014 Medical Advisory Panel.

More details to follow soon. Thanks for you continued support as we seek to find a cure for our kids!

The Pass

We-are-all-in-the-gutterI just had a touching moment with Isaac, another one of those beautiful moments when I marvel at how incredibly insightful and thoughtful he is.

Everyone who knows Isaac knows that he loves music.  John’s his favourite, followed by Danny Michel and Adele.  But he loves all music, and listens intently to the lyrics, often wondering about their meaning.  He gets emotional, sometimes, at the sad songs, and he rocks out to the fun ones.

It’s easy for him, too, because we always have music on in the house.  Or in the car.  Or garage, or outside.  Music is everywhere in our life, which is probably why we’ve made it a central component of our Gala For A Cure every year.

A few minutes ago, Isaac popped over and asked “Dad, which song was it that made you want to start The Isaac Foundation?”  I was surprised – I haven’t told too many people when and how The Isaac Foundation came into being.  But I have told those close to me – probably in one of my many emotional or reflective or “softy” moments.  And I should remember that Isaac sees and hears EVERYTHING.  It should come as no surprise that he’s heard me tell the story before.  But he’s kept it inside; pondering, perhaps, how a song could start someone on the journey we’ve found ourselves on.

I smiled and told him I’d put it on for him.  We listened, but he wanted to know EXACTLY what about the song made me want to start our charity, and our search for a cure.  We skipped back to the start of the song and listened closely together, reading the lyrics on the screen at the same time.  I watched him tear up as he read, and I described the moments in the song that woke me up out of my grieving, the message that got me the hell out of bed and on my way to finding a cure

Whenever I put that song on, I’m always transported back to those days after diagnosis – the awful, dark days when I couldn’t get out of bed.  The weeks that I couldn’t eat (I lost 40 pounds quickly).  The haunting nightmares I had, the dark, dark places my mind took me to.  I remember driving through a dark February night, watching the stars, and trying to escape with some music.  And I remember this song coming on and knocking some sense into me.  I decided on that night that I wasn’t going to lay around and feel sorry for myself.  My son, after all, wasn’t going to get better by me sitting around and waiting for the disease to take hold in him.  Simply put, that February night changed my life.

Going back in time to that night always brings such mixed emotion, and it felt a bit surreal sitting beside the boy I’ve worked so hard to save and reliving it.

Isaac and I finished listening to the song together and we sat quietly for a long moment.  He looked up at me and said “Dad.  Would I be dead right now if you didn’t hear that song?”  My heart aching, I told him no – I would have woken up sooner or later, and we would have figured this out either way.  But I’m glad I heard that song that night.  It’s provided me a turning point I can always look back on, and a reminder to always keep going forward, no matter what (or who) gets in the way.

There’s still many nights I want to cry out “Christ, what have you done?” just like in the song.  More nights than I know what to do with.  But there’s also many more  nights when I remember the Oscar Wilde quote about all of us being stuck in the gutter, and only some of us turning to look at the stars (portrayed in my inspiration song, too).

My boy never ceases to amaze me.  He is insightful beyond his years.  And as we head into our Gala next weekend, and start our journey with our new Non-Profit (announcement soon!), I’m glad he waited until today to ask me about my inspiration for The Isaac Foundation.  I needed to slow down and remember WHY we’re doing what we’re doing, and I’m glad I did.

Song and lyrics are below.  See many of you next week in person or via our Live Stream from the Gala.

Thanks, as always, for your support.

With Love,


“The Pass”

Proud swagger out of the school yard
Waiting for the world’s applause
Rebel without a conscience
Martyr without a causeStatic on your frequency
Electrical storm in your veins
Raging at unreachable glory
Straining at invisible chainsAnd now you’re trembling on a rocky ledge
Staring down into a heartless sea
Can’t face life on a razor’s edge
Nothing’s what you thought it would be

All of us get lost in the darkness
Dreamers learn to steer by the stars
All of us do time in the gutter
Dreamers turn to look at the cars
Turn around and turn around and turn around
Turn around and walk the razor’s edge
Don’t turn your back
And slam the door on me

It’s not as if this barricade
Blocks the only road
It’s not as if you’re all alone
In wanting to explode

Someone set a bad example
Made surrender seem all right
The act of a noble warrior
Who lost the will to fight

And now you’re trembling on a rocky ledge
Staring down into a heartless sea
Done with life on a razor’s edge
Nothing’s what you thought it would be

No hero in your tragedy
No daring in your escape
No salutes for your surrender
Nothing noble in your fate
Christ, what have you done?