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It's APPROVED! 9.19.16

9/23/2016

 

You did this, We did this, They did this, He did this!

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FDA Approves ETEPLIRSEN 9.19.16! 

This is EPIC, as this is the FIRST drug therapy approved to help Duchenne Muscular Dystrophy!

By the Mercy of God and the work of so many fierce warriors, this drug is APPROVED!

It has been a long journey, we’ve been watching this drug since it was in mice back in 2008 when Owen was first diagnosed.  This is the drug that one doctor told us would be approved and in Owen by 2010…..This is the drug that you have made possible through this community’s donations to exon skipping in working with PPMD from day one. 



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We did this!  Thank you so much!  The battle is won but the war rages on!  There is still much to do.  This victory is one step for our boys that can benefit from this drug (13% of the Duchenne population) and we must continue to raise funds and awareness so that all drugs that are either in ‘mice or men’ can become approved and quickly.  Duchenne waits for no one!

Show us YOUR Strength .....

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Show your support this weekend by sending prayer and pocket ($) towards Elsa Kilbane as she runs her 10th Marathon for John Owen!  She will run the Akron Marathon Saturday morning, please donated $9.19 (or any combination of $9.19, $19,19, $59.19, $109.19, etc) at JOA.  This will highlight our community’s strength in not only recognizing our awesome efforts in supporting this AWESOME, EPIC history making event, but supporting the very spirit that makes JOA amazing.
Donate by clicking here


Thank you for your consideration!!  Congratulations to everyone that made this historic event real for Owen and our Duchenne community!  God Bless you and Godspeed
The Dumms
xoxox


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On a side note, Owen is still receiving weekly infusions of Eteplirsen.  He is doing great!  We will continue on the trial until it is completed early next year.  At that time we will have a better understanding of when/how etc he will continue to receive the drug.  Keep on praying that we will continue to make progress, gain strength and fight on! 

Owen is doing well after his spine surgery.  Physically he is a ROCK STAR, recovering very well!  We hope to be back at school in October. Thank you for your prayers and all the support he has received during this time!

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