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... 

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. 

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

BEHIND THE SCENES

While writing about summer dresses and interesting interiors there is something going on behind the scenes. My nephew Ryan has Duchenne Muscular Dystrophy and my sister and brother-in-law are engaged in a huge nationwide effort called #TheRacetoYes, to urge the FDA to approve a drug that will save his life. I am trying to help in any way I can. 

Today I share a glimpse behind the scenes in the hope that you will spread the word and sign an official White House petition to capture the President's attention and urge the FDA to grant accelerated approval for a drug that will save lives. The drug has been studied, science shows it works. It is that simple. 

Meet Ryan. He is a sweet, creative funny kid who is in decline.

The facts below apply to him which is heartbreaking. 

There is a drug that has proven itself in clinical trials. Ryan needs that drug. It is achingly obvious. Science agrees.

SIGN THE OFFICIAL WHITE HOUSE PETITION HERE

An inspiring group of families working together to save the lives of their children and future generations of children with Duchenne MD.  The Race to Yes website is a great way to learn more.  These families are working so hard to be heard while they are watching their children deteriorate before their eyes.  

As of this writing, they still need 93,564 signatures by March 27th. 

Our voices are needed to help these children. 

The way we can do that is by signing the petition. 

Thank you for stopping by the blog today and thank you for allowing me to share this story with you.

more links and information:

the Race to Yes Facebook page - like for updates

the Jett Foundation

Charley's Fund

the Race to Yes press release - a good one stop summary