For a quick update on Nathaniel, we are happy to report that our experience with the new drug Trikafta has been nothing short of amazing. He has been gaining tons of weight, remaining illness free, and, probably most importantly, recently tested negative for having Cystic Fibrosis. While this drug is not considered a cure, it is clear that it has allowed his body to act normal at a cellular level. It is too early to know for sure, but there is talk that he may no longer need to complete daily breathing treatments or take enzymes with every meal. This miracle pill is a direct result of the research that is primarily funded by donations made to the Cystic Fibrosis Foundation.
But sadly not everyone affected by Cystic Fibrosis is experiencing the same amazing results. There is still a large part of the CF population, including other families that are close to our heart, that are still waiting for their miracle drug. While great progress has been made, there is still much more to be done.
After some consideration, Nathaniel has elected to not participate in the Great Strides walk this year. We will still be assisting as we can for the event, but we will not have a team walking this year. We are hopeful that we will be able to once again host our bunco/poker fundraiser next year, now that things seem to be back to a new normal.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them and hope you will support us in our efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease, but there are drugs on the horizon to control it. Ninety cents of every dollar donated funds research towards finding a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Watch Nathaniel's YouTube video visit https://youtu.be/ClrXcxgW_mE
Kenny, Sarah, Nathaniel, & Kennedi