A little bit about why I ride.
Shannon Boulay
Fundraising for Rhode Island CF Cycle for Life
Shannon Boulay
There is currently no cure for cystic fibrosis and too many people with CF die young or struggle along their way. My daughter Aubrie is living with cystic fibrosis. I’m cycling because she is my inspiration to help fund medical research and help change that struggle for the better.
Cystic fibrosis is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure. With pancreatic struggles, like my Aubrie, gaining weight and absorbing nutrients does not exist without the help of pancreatic enzyme replacement pills. They need to take this medication every single time they eat.
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. There are plenty of people living with CF who still need a modifier like Aubrie's Trikafta. They are still waiting because everyone with CF has different genetic mutations, and about 7% of people living with CF are still waiting for a modifier that would work for them. These modifiers help correct the proteins throughout the body so they generally have healthier lungs, grow more easily, and are healthier overall. Everyone deserves the chance to significantly improve their quality of life, don't you think?
Will you help us end cystic fibrosis?
When you donate toward 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.
Cystic fibrosis is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure. With pancreatic struggles, like my Aubrie, gaining weight and absorbing nutrients does not exist without the help of pancreatic enzyme replacement pills. They need to take this medication every single time they eat.
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. There are plenty of people living with CF who still need a modifier like Aubrie's Trikafta. They are still waiting because everyone with CF has different genetic mutations, and about 7% of people living with CF are still waiting for a modifier that would work for them. These modifiers help correct the proteins throughout the body so they generally have healthier lungs, grow more easily, and are healthier overall. Everyone deserves the chance to significantly improve their quality of life, don't you think?
Will you help us end cystic fibrosis?
When you donate toward 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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