As many of you know, our daughter Mamie has Cystic Fibrosis, a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. Mamie is a funny, active, and bright 11 year old, but inside, her body is fighting every day to slow damage to fragile lung tissue she needs to breathe.
Living with a chronic disease like Cystic Fibrosis opens your eyes to the beauty in the world and teaches you to find joy in the simplest of moments (a sentiment that many of us have shared as we reflect upon the past two years). Unfortunately, it also leaves you feeling as if you are navigating a tightrope without a net. One wrong move and the hard work and perfect balance is upset.
Over the past year Mamie has spent almost 400 hours doing chest therapies and inhaling a variety of medicines. Mamie takes an average of 18 pills a day, that’s 6,570 pills per year. One of those medications,Trikafta, has been proven to improve lung function and significantly reduces the rate of pulmonary exacerbations, which can lead to frequent hospitalizations and accelerated lung disease. This game changing therapy is available to Mamie and others with CF because of the fundraising efforts of the Cystic Fibrosis Foundation and people like YOU. It’s a huge step, but it’s not a cure.
The CF Foundation is making progress every year in the treatment of CF and the medical innovations that are helping people with CF live longer, but they need continued support to keep the fight going. That's why your help is needed now more than ever to ensure that a cure is found sooner rather than later for all people living with CF. Please help us add tomorrows to the lives of people living with cystic fibrosis, by making a 100% tax-deductible donation today!
This year we look forward to returning to the in-person Great Strides event on Saturday, May 14th at Payson Park in Portland. Registration opens at 9am and the walk around the Back Cove begins at 10.
If you are able to join us (yeah!) click on “Join This Team”
If you cannot join us in person but would like to support the efforts of the CF Foundation through a donation (you rock - thank you!) click on”Donate to a Team Member”.
We look forward to connecting with friends and family, celebrating scientific breakthroughs, and cheering on the mission of the Cystic Fibrosis Community - to provide all people with CF the opportunity to lead long, fulfilling lives.
Thank you for your support!
Sarah, Don, and Mamie