Ashley is an inspiration in the CF world and has created her own non-profit, Breathe Bravely helping those with Cystic Fibrosis (CF). She is a professional vocalist and has her own private vocal studio where she helps young people find their voice. Her story is truly inspiring. Check it out below!
Ashley is a 33 year old from Sioux Falls, SD and was diagnosed with Cystic Fibrosis when she was only one month old. Since her older brother was diagnosed late at 6 years old she was automatically tested and diagnosed as a baby.
Ashley’s daily routine consists of taking 45-55 pills a day in addition to two airway clearance treatments (Monarch & nebs) to monitor her CF. Airway clearance treatments are used to break up the sticky mucus that coats the lungs and other areas of the body. Each treatment lasts around one hour and is conducted by wearing a vest that shakes and vibrates violently. Those with CF must do this everyday to stay healthy and avoid complications. This means doing treatments on vacation, while at a friends house, while camping ect. Ashley also uses singing to help with airway clearance, strengthening the respiratory system and breathing awareness.
Her life motto is “live your truth” and she lives that everyday with her husband Mark and two pups Calvin and Cooper. Cystic Fibrosis cannot stop her from doing her favorite things which includes singing, making music with others, writing, connecting with people over coffee, soaking up sunshine on warm days, spending time with my husband and close friends, and painting.
Ashley has a single F508del and insequencable mutation and her biggest struggles with CF are complications that involved her respiratory system (lungs/ sinuses), and over the years her disease progression has involved surmounting drug resistance and intolerances, along with hemoptysis and recurring infection complications. With that being said in January of 2020 she was grateful to receive access to Trikafta, a new drug to help those with CF.
When asked what she wants others to know about CF she said,
“CF itself, along with the people who support us each and every day have helped to shape who and all we are at this moment. We were never given the choice of whether or not we have CF, but we will always have the choice of how it impacts our life. I have found, in my own life, that by embracing my truth of CF and the people that come along with its community my life is far more beautiful than I could have ever imagined. We can always find the beauty in every breath.”
Her hopes for the future includes continued development of treatments, modulators, and therapies for every genotype of cystic fibrosis. A continued creative approach to solving the diverse landscape of CF complications ascribed to every unique individual.
Fundraising to Ashley means It means community. It means not only believing in tomorrow, but fighting for the opportunity to know it.
Cure CF works so hard to fight for Ashley and her hopes for the future. Through fundraising we are able to invest in research for CF and fight our way to a cure. We do what we do everyday for those like Ashley. We won’t stop until there is a cure for CF.
Donate here to help provide HOPE and find a CURE for Cystic Fibrosis
CLICK HERE to check out Ashley’s non-profit Breathe Bravely