Still waiting.....

FDA postponed AdCom for Eteplirsen

We continue to wait, that is what Duchenne families are used to doing, right?  Wait.... hurry up and wait.

The FDA postponed the AdCom meeting previously scheduled for January 22, 2016 Meeting of the Peripheral and Central Nervous System Drugs Advisory Committee.

So now we wait.....  The approval 'decision' has been moved to May 26, 2016.  More waiting

Please keep your prayers laser focused that this group of people can feel the sense of urgency we have to stop duchenne. 
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Ash Wednesday Reflection....

We don’t get remission
We don’t a cure
There is no surgery

There is no lifestyle change  - we can’t simply ‘quit duchenne’ and expect our lifespan to improve

We wake up every morning with less muscle than we had the day before

We grasp at any new therapy, vitamin, mineral, treatment

We look to our legislators and regulators expecting them to feel the weakness we see right before our eyes, shocked and saddened when their response to our needs are slower than a snail’s pace.

But the one thing we get… I mean we really ‘get’

is to live

I think most of you looking in could be jealous at the shear amount of living we do … it’s a darn shame that it took our diagnosis eight years to wake us up to the fact that we got today

And that is just what we have…. That is what we get

Today

Go get busy living, will you?

if not for you, for John Owen and all our Duchenne boys….

The Dumms


PS - While we wait...   we hope you will enjoy the play by play back from 2008 of crazy momma (jen) trying to get the photo for Easter.... 8 years ago Ash Wednesday - these photos feel like yesterday..... Live for Today!!!