HELP RYAN DUNNE

With motherhood, it’s like you become the Mom of the whole world, your heart hurts for little ones you don’t know at all, but know are hurting. I know you’re with me, we’re Moms. We feel bad for the kids on the other team when our kids win a sporting event, we cry when we see child abuse on the news or a kiddo in a hospital bed. So, given that, and the fact that I just watched Dallas Buyer’s Club and am in the mood to question the purpose and effectiveness of the FDA – this email struck a nerve with me, hard.

Please take a minute to help Ryan Dunne, a 9 year old Denver boy with Duchene Muscular Dystrophy (DMD). DMD has traditionally been considered terminal with no known treatment. However, there are two medications that were effective in clinical trials – Ryan was in the trials and did great, he and his family saw significant improvement – but are awaiting FDA approval. Since the trial is over and the drugs aren’t approved yet, Ryan has to be off the medications until they’re approved. He stopped taking the meds in September and his Dad says he’s “starting to slide down the slippery slope of DMD that ends in death.”  I know that hurts your heart, mine too. There are drugs that Ryan and his family know will help, but he can’t have them until the FDA approves them.

Please help! There’s an on-line petition that needs 100,000 signatures by March 29, 20014 to get the FDA’s attention. It literally took me under a minute to create an account and sign.  Of course I was crying, and praying for this family, and hugging my 9 year old.

Please see the email below from the Dunne family.

*I don’t know the Dunnes personally, this email was sent to me by a friend whose children go to school with Ryan. I’m so happy to help, and know you are too.

Thanks!

 

 

Hi Everybody,

 

I would like to apologize in advance for the mass email blast. I know how

much every body hates this sort of thing, but this is very important.  I

need 2 minutes of your time. If you dont want to read this than just

follow the liv=nk and sign the petition.

 

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

 

Most of you know my son Ryan. Ryan is 9 years old, a 3rd grader and has

Duchene Muscular Dystrophy.  DMD is a terminal disease that, until now,

has had no treatment and no hope for long term survival. Kids with DMD

start to get weaker in elementary school and are often confined to an

electric wheelchair by middle school.  It does not get any better. The

body becomes progressively weaker and the boys lose the use of their upper

extremities, followed by weakness and loss of function of their lungs and

heart.

There are two medicines that are awaiting approval by the FDA that can

treat DMD.  We know this because Ryan was part of a group of boys that

were in a study last year to test the effectiveness and safety of this

medicine.  In the six months that Ryan was taking one of these drugs we

saw marked improvements in his strength, stamina and health overall. He

has been off the medicine since September and we can see him starting to

slide down the slippery slope of DMD that ends in death.

This is where you come in. Ryan needs you to sign an on line petition to

urge the FDA to approve the re-dosing of this drug immediately.  We need

100,000 signatures.  That is a lot. I don’t know that many people and I

doubt that any of you do, but like that shampoo commercial if I tell two

friends and they tell two friends and so on and so on. We can reach

100,000 pretty quickly. They got way more than 100,00 people to sign a

petition to get Beiber sent back to Canada in a matter of days and this is

so much more important.

 

So, Here is the link:

 

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN

 

please click it or cut and paste and follow the instructions and then bug

your friends and their friends to sign this petition, share it on

Facebook, Twitter or wherever you want. Copy any or all of the text.

Please dont put this off till later we need 100,000 signatures by the end

of March.

 

Thanks,

Chris, Jen, Conor, Jack, and Ryan Dunne

 

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