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You Can Help Save Ryan’s Life in 2 Sweet Minutes

March 6, 2014

Sweet Friends –

You are needed to HELP SAVE RYAN’S LIFE.

Ryan is a 9-year-old boy who has Duchene Muscular Dystrophy (DMD). Until now, it has been considered terminal with no known treatment.

I don’t know Ryan personally, but our bffs (and many favorite friends) go to school with him in Denver. The community is rallying to share Ryan’s story and ask for your help.

There are two medications that have been effective in treating DMD when used during clinical trials. Ryan was in one of these trials and saw sweet improvement.

The medications are awaiting FDA approval.  Ryan has had to be off the medications until they are approved. He is quickly seeing the decline.

There are drugs that Ryan and his family know will help but he can’t have them without the FDA approval. 

It’s like a 9-year-old version of the Dallas Buyer’s Club.

YOU CAN HELP!

There is an online petition that needs 100,000 signatures to get the FDA’s attention for accelerated approval of safe, effective, therapies for Ryan and thousands of others suffering from DMD.

CLICK HERE TO SIGN THE PETITION NOW

It takes 2 minutes to create an account (requires name and email only). I was the 9,550 person  to sign. They need 100,o00 by March 29, 2014 for the FDA to respond. 

petition

Following is the full email from Ryan’s dad, mom, and brothers:

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 don’t want to read this than just follow the link 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 don’t put this off till later we need 100,000 signatures by the end of March.

 Thanks,

Chris, Jen, Conor, Jack, and Ryan Dunne

We have an almost 9-year-old. Many of you do to0. In fact, while I was writing this post,  Briggs came down to show me his outfit for his school play next week. I started crying as I took this picture.

I hope you have two minutes to spare tonight. Your sweetness will make a difference – for Ryan, his family, and so many others fighting a similar battle.

Sweetly,
kristi

b in costume

The sweet innocence of (almost) nine.

 

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Tim Ferriss's 4-Hour Workweek and Lifestyle Design Blog

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