The Meaning of Hope

“I had to stay alive, keep breathing, even if there seemed no reason to hope…” 

Some people read this quote off my ribs where it is permanently inscribed and think that is morbid, and sad. I, however, have always found it to be beautiful and have always read it to mean that no matter what, there is always, always reason to hope. Kalydeco, the first drug EVER to target the actual defect that causes cystic fibrosis was approved today by the U.S. Food and Drug Administration! This is hope, if I’ve ever seen it. Until now all drugs in the CF pipeline have been therapeutic not curative, and while we are still far from a cure, we are closer than ever. The hope that we’ve all carried in our hearts has turned into a wild fire and is blazing, the cure that so many generations have dreamed of and hoped for is around the corner! All of the funds that we’ve raised for decades, all of the time, all of the commitment, worked. It worked. While this drug is currently effective for only 4-5% of the national cystic fibrosis population, it tells us, loud and clear, that defect altering treatments are possible.  My heart breaks, it really does every day, that this didn’t come in time for my two beautiful cousins, that our efforts couldn’t save them and so many others that we have lost, but still I can’t help to feel elated that so many lives have been changed today by the approval of this drug and that so many lives will be changed in the coming years as more and more of these treatments targeting more and more mutations are discovered and approved. The CF community defines hope, they have fought a relentless fight against a cruel and devastating disease and they are winning, their hope, their conviction, their love of life has not waivered, and the approval of Kalydeco is proof.

There is always reason to hope, no matter the situation, no matter the challenge, no matter the hurt and the pain, there is always, always reason to hope. 

For more information read this article from the Washington Post: Vertex drug is breakthrough for handful of cystic fibrosis patients, offers hope to many more

Or go here: FDA Approves Kalydeco (VX-770) - First Drug That the Underlying Cause of CF

Or here: Kalydeco, Drug That Treats the Root Cause of Cystic Fibrosis, Approved by FDA

 And to donate to the Cystic Fibrosis Foundation to help continue this amazing research for new drugs and a cure for cystic fibrosis click on the Great Strides box on the right side of my blog :) (myself, my friends and family, and the 30,000 CFer's nationwide and their friends and families thank you in advance!)