Please join us in supporting the Cystic Fibrosis Foundation by walking with us at the Great Strides Walk on Saturday May 20, 2023 in Huntington Beach!
Our son Rowland was diagnosed with Cystic Fibrosis at six months old after a false negative newborn screen. The past year has involved navigating new daily treatments, processing our feelings related to his delayed diagnosis, and dealing with the uncertainties that exist with a CF diagnosis.
One of the hardest realities to grapple with is that Rowland does not have access to a modulator (a medication that addresses the root problem of the disease and doesn't just treat symptoms and has changed lives/ increased life expectancy) due to his two rare mutations. This is a medication that only 5-10% of the CF population does not have access to (in the US) and Rowland unfortunately falls into this category,
We as parents have to live with the uncertainty that currently exists in part because Rowland does not have access to a modulator and we don't know if/when he will get access. We're hopeful that he will, but we do not know how he will respond to it. We have very real fears about his quality of life in the future. At the same time, we also know we live in an age where the outlook for Cystic Fibrosis is the best it has ever been. There are life changing medications and treatments that I know will extend Rowland's life expectancy and improve his quality of life and ultimately we believe there will be a cure in Rowland's lifetime!
However, we are not there yet. This is why we humbly ask for your donation to the CF Foundation. This is a wonderful foundation that has provided a ton of support and information to us. In addition, they provide funding to researchers who are working toward additional treatments for people living with CF. They provide focus groups and value input from the CF community. Your donation truly will go to a meaningful cause!
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
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