The CF Smackdown has begun. Our goal is to help end cystic fibrosis this decade.
As a young family, like many other affected by this disease, this is not a fight we asked for. We also recognize this is not a fight we are alone in. Our conviction to combat this disease is one shared by so many who have fought before us, and who fight alongside us now. Anyone in this fight deserves our deepest respect, and our deepest gratitude.
As recent events have shown, this is a time of breakthroughs in CF. Kalydeco was approved earlier this year (in fact, within two weeks of the birth of our daughter), and it changes everything. Momentum is building, CF is no longer invincible, and it is time to pile on.
So while the CF Smackdown was launched by one family, it is not about one family. There are far too many families affected by this disease, and we’re all better off standing up against CF together. And doing something.
That’s what the CF Smackdown is about. Patients, families, groups, companies, organizations, heroes– standing up, and doing something to help win this fight.
So what are we going to do?
Like everyone else touched by CF, we were initially thunderstruck by the news from our doctors, and for months, struggled to find our footing. Our daughter is doing well, and our plan is to not only regain our footing, but to start walking, then charging forward. We will start by working to help forge a new research collaboration on a certain class of CF mutations (splicing). Not to mention starting the CF Smackdown.
CF used to be invincible. It's not looking so invincible anymore.
It is time to pile on.