CFer of the Month
Raising awareness and placing a spotlight on what CF is and how it affects those born with it is what I strive for everyday. Being CF'er of the month, means that I am doing just that. I'm helping to give a voice and face to this disease.
Currently, I serve as Chair on the CF Adult Advisory Council for the CFF - Oregon Chapter. I participate in Great Strides, have ridden 35-miles in the Cycle for Life event for the last 7 years, was a virtual runner in 2014 for the MTJM 5K, I use my social media presents as a way to allow my followers into my life with CF, I've meet with Oregon's Governor to discuss CF and give our representatives a better understanding of what CF is and how it affects us, our families and friends; and I've spoken publicly about my journey with CF.
For me, being CFer of the Month means that I’ve overcome my fears of sharing openly about my Cystic Fibrosis and embraced using my voice on social media to raise awareness within our community. This honor honestly really means even more to me, simply because it means while so many within our CF community have lost their fight this past year, so many who inspired me, I’m still here, and I can use my voice to keep fighting for them- to finish where they left off! Staying silent within the CF community would be easy, but using your voice, putting yourself out there- that’s TOUGH! Sometimes the things I share are real and raw, but that’s what we need to be doing to raise more awareness- to get REAL with people. Years ago, when I was still hiding from my own CF symptoms, I found so many strong women within the CF community who inspired me to BE MORE and DO MORE to raise awareness. And truthfully, sharing more keeps me that much more accountable to my own CF health, and that’s always a good thing, right? Our lives matter, and our voices deserve to be heard, and it’s incredibly amazing and such an honor to know that my little voice right here in Tennessee has made an impact within our community.
Raising awareness is absolutely essential for the changes we need within the CF community to find a cure! Doing this on our own may be possible, but it will certainly be more difficult. Sure, we could spam pages with fundraiser links, and that works and is a great resource! Honestly though, it’s the STORIES that people connect with- it’s the REAL people going through hard times and pushing through and fighting back! Each time one of my Cysters or Fibros needs prayers in the hospital or is raising money for new lungs, it’s always the STORY that I want to share- what they’ve accomplished and overcome and what they are stilling doing and fighting for all while most people would throw in the towel. We are such a strong but small community, so linking arms and being in this together is KEY. Sharing our stories- both success and struggles- are getting us closer to a cure, one day at a time.
Hunter doesn't let CF define who he is. He loves working out, hunting, and camping. He attends college full time to become a football coach. He has a girlfriend. He believes in living a healthy life. As well as living life to its fullest..
Tara is a strong young lady. She attends college to be an ultrasound tech plus works evenings and weekends at a local grocery store. She has made many friends with CF across the United States and does well with treatments, medications, and appointments. She does not let it hold her back from life and her dreams. She takes everything in stride and doesn’t complain.
Dangerous D as Tommy likes to call her, doesn't let CF stand in the way of her goals and living life to the fullest. You will never hear her say I can't as a matter of fact she will rarely tell you even when she is sick. She has big goals for herself as she wants to be a Veterinarian that specializes in swine pharmaceuticals. Dalaney shows pigs on a national level she has competed in 10 different states she is a member of Southern Wells FFA as well as Huntington County 4H association.
James is using his second chance at life after double long transplant to coach other people reaching end-stage Cystic Fibrosis, and help turn them into ideal transplant candidates in the eyes of the beholder's.
He works as a fitness coach and has always worked pro-bono for fellow people with cystic fibrosis. This means, he puts all of his time and effort into you for free if you are suffering from the same disease. He worked on and improved over 400 diets for people with CF. Many of which we are all mutually friends with. He does his best to spread the word and share his 'blueprints' for survival with everyone in the same position. This includes diets, workouts, explanations as to why for each detail. Basically he makes it as easy as possible to become James. And then pays it forward and spreads the word.
He has been working closely with fellow CFer Taylor Raffield Singletary for the last year when she was rejected for transplant. He coached her word for word and play-by-play to become an ideal supreme candidate, including how to crush goals like dominating diabetes and gaining weight for transplant requirements. Everything he has ever learned, he poured into this girl and just days after making the transplant waiting list she received her lifesaving double lung transplant.
She's his biggest success story that fully deserves its own nomination. But she will absolutely be nominated in the future. Because what he has taught her was incredibly valuable in life lessons that will be shared to many of those in need when Taylor is ready to teach and complete the cycle of paying it forward as he has.
Madi has been advocating for Cf since she walked in her first Walk for Cf at 1 yr old, she has walked every walk since. At 12 she took the Ontario Government to task to get govt funding for Kalydeco a drug that works for 3% of the CF population but costs $350,000 per year. She did win the fight.
She personally raised $6,000 to assist a fellow CF'er who was in hospital under going double lung transplant and who's family needed assistance to be able to cover costs and travel expenses. Her most recent hospitalization in April she raised $1,000 for the CCFF by painting pics each day of her admission and auctioning them off online.
She is in two different advocacy groups one, We are more - out of California (under Global Genes) advocating for kids with disabilities as well as a sub group of CF Canada to be launched in Dec of this year. She makes herself available for all studies in hosp as well as opportunites outside hospital to raise awareness. I believe she shows the warrior spirit of those battling CF.