RACE TO YES UPDATE

Hello and thanks for stopping by today. Yesterday we got some great news in the Race to Yes!

The FDA FINALLY gave guidelines to drug maker #Sarepta in order for them to apply for accelerated approval of a life saving drug for boys with #Duchenne Muscular Dystrophy. My nephew Ryan suffers from this fatal disease.

It has been a long journey to get here and those of you who signed the White House Petition and the amazing families who make up the Race to Yes Campaign should be very proud. This Petition, coupled with the persistent campaign mounted by the Race to Yes have directly put pressure on the FDA to act.


What does this mean?  In short it means the drug company #Sarepta has been given the green light by the FDA to proceed with further clinical trials in the near future and are now allowed to apply to the FDA for accelerated approval of the drug. This is hope. This is progress. But we are not done yet. The pressure needs to stay on the FDA until this Race crosses the finish line.

Read the press release from The Race to Yes here

Thank you for tuning in, thank you for caring and signing and sending out good thoughts.

Stay tuned as the Race to Yes continues!

GET HAPPY

We are in the home stretch.  This is the last 5 days to sign the petition urging the FDA to use their power of accelerated approval to save my nephew Ryan Dunne and countless other kids from the fatal disease Duchenne Muscular Dystrophy.

The Cherry Hills Village and Denver community support has been overwhelmingly beautiful. Celebrities, sports stars, and total strangers have taken it to heart and are helping get the word out. Please support these kids who have no chance to beat this disease otherwise.  This is the closest shot they have at survival and it is out of reach. Science agrees.

Watch this and get HAPPY. It will make you smile, and then I hope act. 

Please sign the petition here. 

WE NEED YOU IN THE HOME STRETCH

The loving and highly enthusiastic friends of my sweet nephew Ryan Dunne did this video (to Pharrell's 'Happy') the other day. So touching! 

If you haven't already please go to The Race to Yes or Help Ryan Dunne or directly to the petition here

and sign

and share

We have until March 29th to make 100,000 signatures happen. And we need your help. 

If you would like to read  more about Ryan and why this is so important that the FDA hears our voices you can find information Duchenne Muscular Dystrophy on The Race to Yes website  and  www.helpryandunne.com

IN THE NEWS

Momentum is gaining but we still have a long way to go to get to 100,000 signatures. My sister was on CBS news lastnight in Denver. Please watch and if you haven't already, sign the official White House Petition to help him get the drug he so desperately needs.

He is awfully cute. The little guy just wants to dance... but he can't. This is a huge change since we saw him in December. That is 3 months ago. I was shocked at the decline when I watched this.  For more on Ryan go to www.helpryandunne.com.  For more on Duchenne Muscular Dystrophy visit The Race to Yes.