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