So, we just watched the Cystic Fibrosis Foundation webcast; I am overwhelmed with hope.
Why? We are on the verge of finding the medications needed to help slow the progression of CF radically. Kalydeco along with vx809 looks to be very promising for those with the double Delta F508 gene (like Lorenzo). The thought of this brings tears to my eyes for the thousands of CF patients with this gene.
Kalydeco has shown great improvement in lung function in these patients. Seriously, the thought of not having my son take 20+ pills a day, 3+ nebulizers, and loads of vitamins a day, really makes me happy.
But as much joy as these promising studies show, it is still heart wrenching to know that these medications are still years off. It saddens me to know that the same can not be said with others who have different mutations of CF. As these patients have many more years of study before they could be anywhere near this close to a “cure”.
We need to be vigilant in the fight for CF. We need to stand up and be heard. We need to let people know that we are here. We can’t keep CF in the dark. We need those in Washington to see us, and help fund research. We need to educate others, and help drive donations. We need each other. One voice is quiet, but together we can be heard for miles. Let them hear us all around the world.