Despite this progress, many people with CF currently do not benefit from existing therapies, fight hard daily to stay alive, and some, like myself, experience rare complications of CF that do not yet have treatments available, thus further shortening lifespan and lowering quality of life. My greatest struggles of living with CF are battling chronic pain, severe gastrointestinal challenges resulting in removal of my colon, having surgery for a permanent ileostomy pouch, dealing with severe malabsorption thus requiring feeding tubes to receive nutrition and hydration, total gut dysmotility, CF-related diabetes due to pancreatic insufficiency, CF-related arthritis, rare respiratory infections, sinus disease, and hearing loss. These problems are irreversible, but the CF Foundation helps fund research for vital therapies to help increase quality of life while living with them such as:
~ Helping make a portable airway clearance therapy vest machine thus allowing me to travel more easily and have more freedom to move around during my daily respiratory treatments.
~ Paying for and provide legal assistance to maintain my health insurance and help me get medications and therapies covered.
~ Funding research for vital inhaled medications that help my lungs function.
~ Funding enzyme cartridges I can connect to my tube feeding equipment so I can digest the formula and get nutrients 24/7.
~ Accrediting a local hospital in Charlotte to be an official CF Care Center so I don't need to travel 300 miles for CF care and can receive better care.
I am proud to be part of ROSE UP this year along with others in the CF community who dream of the day when CF stands for Cure Found. I have sadly lost many dear friends with CF: Emily, Delaney, Beth, Olivia, Claire, and many more who did not get to stay alive as there are not yet medical advancements available to help them. Many of my CF friends and myself have to fight wearily for help and to stay alive due to rare complications from CF that the healthcare world struggles to remedy. Despite my struggles, I still love to work at my church and serve the Lord, travel whenever I am able, paint, read, cook, and spend time with my family and friends. Please join me as I fight CF and help raise funds for all my fellow warriors so there can be medical advancements to improve our lives!
Take the first step by donating to my personal campaign and sharing my fundraiser and story on social media on September 17, 2021, which is ROSE UP day.
Thank you in advance! Whether you make a donation, raise awareness about CF by sharing my story and tagging #ROSEUPCF on social media, or do both – you are making a powerful difference for people living with CF and spreading necessary education and awareness.
Let’s ROSE UP together!
Your donation is eligible to be tax-deductible. For exact details, please click in this link: CF Foundation Donation FAQs