My CF Climb Story

Hello Friends & Family, as most of you know by now, our daughter Kennedy was born with Cystic Fibrosis almost 18 years ago.  I still remember how devastated we were when Kennedy was diagnosed at 1 month old. When I met Nicole 6 years prior to her birth,  Nicole had recently lost a high school friend, Randy, at the age of 26 to Cystic Fibrosis and complications with a much needed 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 me replying with unsteady voice "yes, most likely"

After 17 years of Climbs, Walks, Galas & other fundaisers, we now have an optimism 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 27th . We are excited to return to our Saturday morning Climb this year 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 graduated H.S and has been accepted to the University of Wisconsin, Madison. She has been working at a pilates studio, lifeguarding & babysitting. She also got trained as a CNA, and will be working at a nursing home this summer to save money for college.  Kennedy still has a goal of attending medical shcool one day. She still spends 30 minutes every morning and night doing inhaled lung therapies with vibrating vest to loosen her lung mucus. 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 4.5 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. Trikafta is not a cure, so she continues to do all of her therapies and other medicaitons.  We continue to see the awesome pulmonary team at Childrens Hospital quarterly to make sure she stays that way!