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I ROSE UP for Warriors with CF

Abi Gordon
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My name is Abi, I am 29 years old, and I am a CF warrior. I live in North Carolina with my family and sweet service dog named Skipper. When I am not working at my church and actively serving the Lord, you can find me traveling as I am able, singing with my choir, writing on my blog, cozy in bed reading a variety of books, educating about CF and chronic ilnesses on social media (@ephemeralwarrior), enjoying the outdoors, stirring up a delicious dish in the kitchen, or spending time with my family and friends. I am excited to share I am participating in ROSE UP for the 2nd time on October 24, 2024!

ROSE UP, now in its 5th year, is a virtual fundraising event created and led by adults with cystic fibrosis to bring the CF community together to advance the mission to find a cure and to improve the quality of life for all people living with CF. Recognized globally, the CF Foundation has led the way in the fight against cystic fibrosis, fueling extraordinary medical and scientific progress. Working alongside the CF community, the Foundation has fostered the development of more than a dozen CF treatments – an unprecedented number in a short span of time -- and helped add decades of life for people with CF. Despite this progress, many people with CF currently do not benefit from existing therapies.

My personal page's ROSE UP participants are encouraged to choose an artistic activity that is meaningful to them to accomplish on ROSE UP day. That activity could be writing, drawing, painting, baking, singing, dancing and so much more! The national goal this year is to raise $555,000, and my personal goal is $500-1,000! Consider promising completion/publication of your unique artistic activity by inviting friends and family to give a certain amount of donation funds towards my ROSE UP page! The more your donation goal goes up, the closer you to completion of your project. You could even auction off your artistic project and give the proceeds towards my CF Rose Up fundraiser, as I did one year. 

Whether you make a donation, raise awareness about CF by sharing your connection to a CF story and tagging #ROSEUPCF and #ephemeralwarrior on social media, or do both – you are making a powerful difference for people living with CF.  Thank you for your support! Despite this progress, many people, including myself, 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 and severe gastrointestinal challenges resulting in removal of my colon, having surgery for a permanent ileostomy pouch, dealing with severe malabsorption thus requiring IV central lines and feeding tubes to receive nutrition and hydration, total gut dysmotility, CF-related diabetes due to pancreatic insufficiency. Additionally, I battle CF-related arthritis, rare respiratory infections, sinus disease, and hearing loss from antibiotic toxicity. 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: 

  • Endorsing a custom-designed airway clearance therapy vest machine that works around my pacemaker and central allowing me to do my daily respiratory treatments. 
  • Paying for and providing legal assistance to maintain my health insurance and help me get medications and therapies covered. 
  • Funding research for vital medications that help my lungs function. 
  • Allowing CF patients to write personal experiences and participate in active research for the CF community. 

I have sadly lost many dear friends with CF: Emily, Delaney, Beth, Olivia, Claire, Christy, and so 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 like Hanna, Cody, Jenn, Heather, Shay, Denise and myself have to fight wearily for help to stay alive due to complications from CF. 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! 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. 

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