Awesome Audrey
It's time for another Great Strides season! This will be year six for Team Awesome Audrey! That's right, our favorite salty girl turns six in July. Audrey has so much going on! She was in gymnastics in the fall and will (hopefully) be on our neighborhood swim team over the summer. She is a kindergartner and loves her teacher, classmates and school. She makes friends where ever she goes and we've seen so much emotional growth in her since she started school.
In her CF life, Audrey remains on the revolutionary medication, Trikafta, for now. When she does turn six in July, she will transition to a brand new CFTR modulator called Alyftrek (A-lift-trek). Alyftrek is only taken once a day, unlike Trikafta which is taken in the morning and evening. Any time we can reduce pill burden for Audrey, we are in favor. We've also learned over the past year or so that Audrey is not a great breakfast eater, which further propels this change. Trikafta must be taken with a fatty meal in order for it to be absorbed by the body, so getting enough calories at breakfast has been a daily challenge. Additionally and probably most importantly, the transition to Alyftrek will lower Audrey's sweat chloride values even more than Trikafta already has. Lower sweat values mean better clinical outcomes including less pulmonary exacerbations and better lung function! Yay!
Our family remains steadfast in our commitment to cure CF. Emilia had the pleasure of attending the North American CF Conference (NACFC) in Boston, MA this past year courtesy of Children's Hospital Colorado. Emilia serves on the Family Advisory Board for the CF Clinic and they offered for a board parent to attend this year. This experience was amazing! Three full days of diving into every aspect of CF with 5,000 other clinicians, researchers, advocates and parents. More than anything, it was evident that the most brilliant minds are working toward improving the lives of people with CF. Furthermore, the passion that these professionals exhibit is just unparalleled. Emilia left NACFC feeling very grateful for the work being done and hopeful for the future.
Not to be outdone, Audrey was the 2024 Rocky Mountain CFF Ambassador last year. She was the cutest little spokeswoman for CFF and helped raise money for Great Strides and their annual end of the year campaign. Caleb even got in on the action with an adorable video of him trying to say "Cystic Fibrosis". Audrey's most impactful video showcased a day in the life with CF including the many enzymes, modulators, antibiotics, nebulizers, vest treatment and more that she has to do every day to maintain her health.
Despite all the progress the CF community has made, there's still work to be done. Even though Audrey is doing well, her medications and treatment are not a cure. This girl works super super hard to maintain her health. Furthermore, not everyone with CF can take life changing modulators likeTrikafta and Alyftrek either due to their genetic mutations or because of drug side effects. We encourage you to donate to the CF Foundation, as they are leading the necessary research and drug development to find a cure for all people fighting CF. While a cure is being discovered, CFF is working to improve the quality of life for people living with CF including focusing on their mental health, family planning, finances, fitness and more! There's no doubt that Audrey and others living with CF are Worthey of a cure! Join our team and donate today!
In her CF life, Audrey remains on the revolutionary medication, Trikafta, for now. When she does turn six in July, she will transition to a brand new CFTR modulator called Alyftrek (A-lift-trek). Alyftrek is only taken once a day, unlike Trikafta which is taken in the morning and evening. Any time we can reduce pill burden for Audrey, we are in favor. We've also learned over the past year or so that Audrey is not a great breakfast eater, which further propels this change. Trikafta must be taken with a fatty meal in order for it to be absorbed by the body, so getting enough calories at breakfast has been a daily challenge. Additionally and probably most importantly, the transition to Alyftrek will lower Audrey's sweat chloride values even more than Trikafta already has. Lower sweat values mean better clinical outcomes including less pulmonary exacerbations and better lung function! Yay!
Our family remains steadfast in our commitment to cure CF. Emilia had the pleasure of attending the North American CF Conference (NACFC) in Boston, MA this past year courtesy of Children's Hospital Colorado. Emilia serves on the Family Advisory Board for the CF Clinic and they offered for a board parent to attend this year. This experience was amazing! Three full days of diving into every aspect of CF with 5,000 other clinicians, researchers, advocates and parents. More than anything, it was evident that the most brilliant minds are working toward improving the lives of people with CF. Furthermore, the passion that these professionals exhibit is just unparalleled. Emilia left NACFC feeling very grateful for the work being done and hopeful for the future.
Not to be outdone, Audrey was the 2024 Rocky Mountain CFF Ambassador last year. She was the cutest little spokeswoman for CFF and helped raise money for Great Strides and their annual end of the year campaign. Caleb even got in on the action with an adorable video of him trying to say "Cystic Fibrosis". Audrey's most impactful video showcased a day in the life with CF including the many enzymes, modulators, antibiotics, nebulizers, vest treatment and more that she has to do every day to maintain her health.
Despite all the progress the CF community has made, there's still work to be done. Even though Audrey is doing well, her medications and treatment are not a cure. This girl works super super hard to maintain her health. Furthermore, not everyone with CF can take life changing modulators likeTrikafta and Alyftrek either due to their genetic mutations or because of drug side effects. We encourage you to donate to the CF Foundation, as they are leading the necessary research and drug development to find a cure for all people fighting CF. While a cure is being discovered, CFF is working to improve the quality of life for people living with CF including focusing on their mental health, family planning, finances, fitness and more! There's no doubt that Audrey and others living with CF are Worthey of a cure! Join our team and donate today!
MAR
24
24
Comments