Doin' It For Drew 2020
I'm still at it, because we still don't have a cure for cystic fibrosis.
2020 marks the 65th anniversary of the Cystic Fibrosis Foundation. It's also the 10th year that I have been involved in raising money for the research that has led to more effective treatments for the disease. But there remains a portion of the CF population that will not benefit from these treatments, so we need to keep at it.
We still lose too many to this disease, and to the complications of it.
We need a cure. Please join me on this path to a cure.
Drew will be 10 years old by the time of my walk on May 9, 2020. Drew, and all my nieces and nephews, should outlive me.
But the sad reality is that for as many people with CF who live into their 40s and beyond, we still are losing too many to this disease, and too many are losing too much of their lives to CF. Too many are undergoing lung transplants. Too many teenagers are being evaluated for lung transplants. So we cannot stop yet.
Science is making a difference with drugs like Orkambi, Symdeco, and Kalydeco which are helping many of those with the underlying cause of CF. But they don't work for Drew.
Trikafta is the latest drug. It was approved by the FDA in October of 2019, and does treat one of Drew's mutations. Right now its for patients 12 and older, so we wait.
Science is helping with additional treatments for the symptoms of CF. With additional antibiotics to fight the bacteria that those with CF catch. With advancements in post-transplant treatment to give more years while we continue to look for the cure. Science is able to make the difference because of our fundraising efforts.
Certainly I entered this fight for Drew. But I'm also in it for so many others. For Brad who after getting his lung transplant in January 2018 and then got cochlear implants in August 2018 to restore his hearing lost to antibiotic use. For Linda, 57, who not only fights her own battle with CF, but fights for the children with CF to have an easier time than she did. For Austin who has rare mutations, and could be in the final group that science unlocks. For the Baker Boys who were able to take Orkambi, and have now switched to Trikafta. For King, whose 9 year old sister knows that by supporting the CF Foundation, good things will happen for King.
Together we will find a cure. It must be in Drew's lifetime.
Please consider joining us in our fight to find the cure. Any amount you can donate is greatly appreciated!
Share my family's story. Share how my story has impacted you.
You can also join our team in Honolulu, or create a team for Drew in your city.