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!

100,000!

LAST NIGHT. WE DID IT! THANK YOU TO ALL WHO SIGNED AND SHARED. 

WHAT A MONUMENTAL NUMBER! 

Keep an eye out for more media coverage, more news, more progress. We have a long way to go to get the dosing started but at least we now have hope that the voices of all these brave parents and their children will be heard. 

And ps: you can still sign until Friday midnight!  Let Washington hear it!  

This is a very similar situation to the Dallas Buyers Club story, only Ryan's medicine isn't available in any other country. It IS available here yet the FDA won't grant accelerated approval. The FDA has data that shows its safe. The FDA has had this data from clinical trials for over 18 months and done nothing.  Its time.   

THE RACE TO YES CONTINUES... 

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. 

KIDS HELPING KIDS

Yesterday at Ryan's school, Cherry Hills Elementary, a group of amazing parents and kids put on a dance party to Pharrell's 'Happy' to support Ryan.  How touching and wonderful this is! If you haven't already, please sign the official White House petition to help Ryan get a life saving drug.

A WEEK OF #RYANDUNNE

This week I am posting the single most IMPORTANT thing on my mind and asking you to do something. 

Each day this week is critical to gaining the 100,000 signatures needed by March 29th to get the White House to question the FDA as to why they are sitting on approval of a drug that will save my nephew's life. A drug that science says works.

Momentum is gaining, especially on twitter. Check out @theracetoyes to get on board and retweet. 

Denver Bronco players and PGA golfers are signing, tweeting and retweeting the petition. People have big hearts and these kids need that energy right now.

Please join in that momentum by signing this petition.  If you would like to find out more about why this is so critical you can visit The Race to Yes website.

Here is Ryan's story and the beauty of this website is that it was created by three high school girls. It is so wonderful to see kids take action in this caring way. 

The outpouring of love and support for my sister's family is amazing.  Kids 13yrs and older can sign this petition so if you feel comfortable, talk to them about 'kids helping kids'. 

#ryandunne #fda #duchenne #theracetoyes

SIMPLE PLEASURES

The feeling you get by helping a cause is a simple pleasure. 

If you haven't already, please support my sister in her fight to have the FDA approve a life-saving drug for her son
who has #Duchenne Muscular Dystrophy.  

You can do so by signing an official White House Petition.

Please, SIGN HERE

with gratitude,

xoox

catherine

for more information: the Race To Yes