My Great Strides Story
Frances Weaver
Fundraising for Lower Hudson Valley Great Strides
Frances Weaver
In late 2021 ,my close friend Kayla received the news that her daughter was diagnosed with Cystic Fibrosis. At this time, Luna's diagnosis was shocking and terrifying. I didn't fully understand what Cystic Fibrosis was, but based on my limited knowledge at the time, I knew it was a cause for concern. I now understand that Cystic Fibrosis is a condition that affects the salt channels in the body. It primarily affects the lungs and pancreas, causing mucus to build up and makes Cystic Fibrosis patients prone to lung infections. It can also decrease the function of the pancreas, leading to complications secondary to insufficient nutrient absorption.
Thankfully, Luna's CF-causing gene mutations, F508del and D110E, are known to create a mild case of CF, which can be treated with the use of medications, Kalydeco and Trikafta. While neither of these drugs are a cure, they will allow Luna to live relatively symptom free until adulthood. Additionally, her specific gene mutation is not typically associated with a reduced lifespan.
Thankfully, Luna's CF-causing gene mutations, F508del and D110E, are known to create a mild case of CF, which can be treated with the use of medications, Kalydeco and Trikafta. While neither of these drugs are a cure, they will allow Luna to live relatively symptom free until adulthood. Additionally, her specific gene mutation is not typically associated with a reduced lifespan.
However, the Cystic Fibrosis Foundation has been hard at work to find life-saving treatments for the past decade. As a matter of fact, Luna's current medications Kalydeco and Trikafta were only approved in 2017 and 2020, respectively. Had she received the same diagnosis ten years ago, her prognosis would have been drastically different. With each donation, the CF foundation continues their efforts to research treatment options and aims to eventually find a cure for the disease. For this reason, I have participated in Great Strides, a fundraising event hosted by the Cystic Fibrosis Foundation, for the past three years and again this spring. I am part of Luna's team "The Luna League", to do my small part in eventually finding a cure for this terrible disease.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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