While the COVID-19 outbreak has turned Cystic Fibrosis Foundation (CFF) activities into online events, Cystic Fibrosis Awareness Month continues to move forward, and with an emphasis on patient stories and education.
Observed each May, the month is set aside to raise support and awareness for cystic fibrosis (CF), an inherited disorder that affects about 70,000 individuals globally, including 30,000 in the United States.
Any other year, this month’s schedule would be filled with fundraising and other local activities, such as outdoor bake sales, group walks and runs, and in-person lectures and discussions.
Because of the pandemic, and with most people staying at home and practicing social distancing, these events are being replaced or converted to online activities.
The CFF, which largely coordinates May activities, is suspending all in-person events through June 30. For Awareness Month, the foundation is asking patients and their families and caregivers to share their stories on social media, using the hashtag #CFawareness.
“Sharing your cystic fibrosis story is an important way to help others learn about the realities of life with a chronic illness,” the CFF states on its website. “During CF Awareness Month in May, the community comes together to help others learn about the disease, share personal stories, and unite behind the mission of finding a cure for all people with CF.”
The CFF is also encouraging supporters to share posts from the CF Community Blog across their social media platforms. Posts include “I may not look sick but my CF is still real,” “CF is predictably unpredictable,” “Why CF is more than a lung disease,” and “Five things I wish people knew about my life with CF.”
In a CFF video, a mother shares her thoughts about her child and CF.
“My little one, as I hold you in my arms I think so many things, how perfect you are, your fingers, your toes, those little cheeks,” the mother says in the video. “How I love hearing you breathe. I have so many dreams for you. I hope that you will have the courage to face life’s challenges, and never let cystic fibrosis define you.”
The CFF funds CF research and supports patients through education and other resources. A list of upcoming CFF virtual events can be found on this site.
Regarding COVID-19, in particular, the CFF has created a list of FAQs to address key concerns from the CF community.
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