Doin' It For Drew 2019
I'm back at it again! Actually I never stopped, and I won't until we find a cure for Drew, and everyone else who has cystic fibrosis.
Help me prove that aunts rule! Show the world that this crazy aunty can reach her goal to make a difference!
The latest and greatest news? At a recent medical convention, the median life expectency of a person with CF was given as 47! That means that the parents of a child born today will hear that they can have a child that will live to 47. This is a far cry from 1955 when the foundation was formed and children with CF rarely lived to school age. When parents were told to take their children home and love them while they could. Its also about 10 years longer than when Drew was diagnosed! Its proof our fundraising is making a difference. Everyone who has donated and supported our efforts is part of our team. Pat yourself on your back on a job (so far) well done.
But we are not stopping here. Oh no - there are plenty of years after that. Right?
Drew will be 9 years old by the time of my walk on May 11, 2019. 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 and Kalydeco which are helping many of those with the underlying cause of CF. But they don't work for Drew. Its 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, 56, 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 have actually seen some lung repair after being on Orkambi - its not a cure, but it sure does feel like it some days. For King, whose 8 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.