Doin' It For Drew 2021
I'm still at it, because we still don't have a cure for cystic fibrosis.
Well 2020 had us scrambling to convert our in person events to virtual events. Its now 2021, but the pandemic rages on, and so virtual events will continue. The other thing continuing is the lack of a cure for cystic fibrosis.
At the start of the pandemic in 2020, my nephew Drew got to start using the latest modulator drug to treat his cystic fibrosis. He had the opportunity to start it early because his lung function was in decline. The FDA has since approved the drug for kids 6 and older. Although this drug has done wonders for my nephew, not everyone with CF can take it. It targets specific mutations of the disease. There have also been some side effects that have come to light that have resulted in some people with CF having to halt its use.
So we continue to fight to raise the money needed to expand the scientific understanding of this disease. So that we can develop better drugs and treatments, that will benefit all those with CF.
We need a cure. Please join me on this path to a cure.
Drew will be 11 years old by the time of my virtual walk on May 15, 2021. 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, Kalydeco and Trikafta which are helping many of those with the underlying cause of CF.
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, 58, 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 10 year old sister knows that by supporting the CF Foundation, good things will happen for King. For Shelby who continues to do battle as her lung function decreases, yet is always there to help others along their path. For Cheriz, who does a phenomenal job juggling her CF while parenting a foster child to improve his life.
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. Remember - we're virtual this year, so join us wherever you are!