May is Cystic Fibrosis (CF) awareness month!
CF is one of the more devastating rare diseases in the community, often affecting children and young people. So let’s be extra mindful and purposeful during May to make some waves for our brothers and sisters in the CF community!
WHAT IS CF?
Cystic fibrosis (CF) is a genetic condition that causes progressive respiratory and digestive system damage. Someone with CF has thick, sticky mucus, versus “healthy” slippery mucus, which builds up in their system. That build-up can clog airways, trapping bacteria, leading to breathing problems, frequent infections, lung damage and respiratory failure. Additionally, the thick mucus prevents the release of digestive enzymes, making it difficult for patients to absorb necessary nutrients. Cystic fibrosis typically occurs in one in 2,500- 3,500 Caucasian newborns in the US. In other ethnicities, it is even more rare, occurring in one in 17,000 and one in 31,000 African Americans and Asian Americans respectively.
SOCIAL MEDIA ADVOCACY
There’s no denying that the way people communicate and interact has been changed forever, thanks to the Internet and social media. So why not use those tools to our advantage?
Sharing any cystic fibrosis messages or personal stories is an important way to help others learn about the realities of living with a rare disease.
And thanks to social media, It’s easy to get involved! Tell your CF story on any of your social media platforms using the hashtag #CFawareness.
TAKE POLITICAL ACTION
Never forget that the men and women elected to represent us in Washington and state houses work for us. So let’s not let them off the hook!
Great Strides is a fantastic fundraising and networking opportunity for family, friends, students, and colleagues to come together and make a difference. The event harnesses the power of people with a shared vision and encourages collaboration, team building, and leadership, as we take steps to find a cure for cystic fibrosis.
So if there is one thing we can do during May is register, participate, and/or donate to Great Strides to ensure that the entire CF community can hear us.