Dear Friends and Family,
As May is Cystic Fibrosis Awareness Month, we reflect on how far we have come in this fight to make CF stand for Cure Found. Thank you for standing by us and for helping us to make medical history! We remember when a ‘new’ medication called Kalydeco was approved in 2012; Orkambi was approved in 2016; Symdeko was approved in 2017; and more recently Tricafta (a triple combination of the previous medicines) was approved in 2019, which helps those living with the most common genetic mutation that causes CF. More medications are in the works that appear to be even better tolerated and more effective. There really are no words for our gratitude for this!
Although there are so many new promising therapies on the horizon, the lives of people with CF are still cut far too short. The current median life expectancy is 41 years old. It is impossible to reconcile: holding your baby and understanding he has a built in expiration date. On a theoretical level, we know that we all do, and not one of us knows our own future or that of our loved ones. However, we do all that we can to see that our children have every opportunity we would want for them. CF patients spend an extensive amount of time in the mornings and at bedtime doing therapies to keep healthy, and the handfuls of pills that they must take throughout the day to aid in digestion and fighting infections. It's really quite impressive they do all that they do without missing a beat. It is a small price to pay.
So join us!!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. The 2021 Great Strides Walk is a Virtual Walk set for May 15th, to celebrate the Cystic Fibrosis Foundation and all that it has accomplished. Walk virtually with us by making your donation below. Your gift is 100% tax deductible and 100% appreciated. Or if you prefer, you can mail a check to us (payable to the Cystic Fibrosis Foundation); and we will submit it for you.
Love to you and yours!
The Willems Family