Patrick Jacques
Hello Friends & Family, as most of you know by now, our daughter Kennedy was born with Cystic Fibrosis almost 19 years ago. I still remember how devastated we were when Kennedy was diagnosed at 1 month old. When I first met my wife Nicole 6 years prior to her birth, Nicole had recently lost a high school friend, Randy, at the age of 26 due to Cystic Fibrosis & complications with his lung transplant. When Kennedy was diagnosed, the average life expectancy was only 28 years old. I remember my father asking me about her CF diagnosis, "does that mean she will have a shorter life?" and then me replying with an unsteady voice "yes, most likely"
After 18 years of Climbs, Walks, Galas & other fundraisers, we are now optimistic that Kennedy will live a long life due to some breakthrough drugs (like Trikafta) and therapies that have become possible thanks to CFF research This has only been possible due to donations from people like you, who have given what they can spare to help kids, like our daughter Kennedy, literally BREATHE easier and have hope to live a longer healthier life.
So why are we still climbing? While Kennedy was lucky that Trikafta was effective for her specific d508 mutation, there are still many children with CF who do not have access to this type of drug for their specific mutation. As result, there are still too many children, teenagers and young adults dying too young from Cystic Fibrosis.
We CLIMB so one day every child & adult with CF can live a long, healthy life.
This year the Denver CF Climb returns to Coors Field on a Saturday morning, July 26th, and we hope to raise $155,000 through the Climb. Every dollar helps, so please help if you can and please join us in person at Coors Field
About Kennedy: Kennedy just finished her freshmen year at the University of Wisconsin, Madison. She is majoring in neurobiology and made the Deans list both semesters. This summer, she will be working as a CNA at a elderly rehab facility and an eye surgery center, as well as babysitting. And she will be spending lots of time with her friends and boyfriend before returning to Madison for her sophomore year. Kennedy still has a goal of attending medical shcool one day. She still also takes over 32 pills every day which includes digestive enzymes every time she eats, and liver medication to treat her CF related liver disease. About 5.5 years ago, Kennedy started a breakthrough drug called Trikafta, when it was approved for 12 to 18 year olds. Trikafta is taken twice daily, and was a game changer and really helped her lung function, absorption of nutrients and ability to gain weight. She continue to see the awesome pulmonary team at Childrens Hospital quarterly to make sure she stays that way!
After 18 years of Climbs, Walks, Galas & other fundraisers, we are now optimistic that Kennedy will live a long life due to some breakthrough drugs (like Trikafta) and therapies that have become possible thanks to CFF research This has only been possible due to donations from people like you, who have given what they can spare to help kids, like our daughter Kennedy, literally BREATHE easier and have hope to live a longer healthier life.
So why are we still climbing? While Kennedy was lucky that Trikafta was effective for her specific d508 mutation, there are still many children with CF who do not have access to this type of drug for their specific mutation. As result, there are still too many children, teenagers and young adults dying too young from Cystic Fibrosis.
We CLIMB so one day every child & adult with CF can live a long, healthy life.
This year the Denver CF Climb returns to Coors Field on a Saturday morning, July 26th, and we hope to raise $155,000 through the Climb. Every dollar helps, so please help if you can and please join us in person at Coors Field
About Kennedy: Kennedy just finished her freshmen year at the University of Wisconsin, Madison. She is majoring in neurobiology and made the Deans list both semesters. This summer, she will be working as a CNA at a elderly rehab facility and an eye surgery center, as well as babysitting. And she will be spending lots of time with her friends and boyfriend before returning to Madison for her sophomore year. Kennedy still has a goal of attending medical shcool one day. She still also takes over 32 pills every day which includes digestive enzymes every time she eats, and liver medication to treat her CF related liver disease. About 5.5 years ago, Kennedy started a breakthrough drug called Trikafta, when it was approved for 12 to 18 year olds. Trikafta is taken twice daily, and was a game changer and really helped her lung function, absorption of nutrients and ability to gain weight. She continue to see the awesome pulmonary team at Childrens Hospital quarterly to make sure she stays that way!
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