Cystic Fibrosis Awareness Month is all about sharing
The CF Foundation's theme this year is 'Unity in Community'
From sharing personal stories to switching out Facebook cover photos, there are a variety of ways to participate in Cystic Fibrosis (CF) Awareness Month, set aside each May to acknowledge the CF community and call attention to its needs.
CF is a genetic disease thought to affect some 40,000 U.S. residents. The goal of the month is to raise cystic fibrosis awareness among lawmakers, scientists, public authorities, health professionals, and the general public.
For its part, the Cystic Fibrosis Foundation (CFF) is offering shareable resources to help those with CF and their families and caregivers tell their stories on social media using the hashtag #CFAwarenessMonth. This year, the organization’s awareness month theme is “Unity in Community.”
“Cystic fibrosis affects people of all races, ethnicities, and identities, and the disease can manifest very differently depending on the individual. At the CF Foundation, we celebrate these differences. We are stronger together and this CF Awareness month we recognize that there’s unity in community,” Sue Sullivan, the foundation’s vice president and head of community partnerships, said in an email to Cystic Fibrosis News Today.
“Our community of individuals with CF, caregivers, siblings, friends, clinicians, care teams, and many others are celebrating our collective achievements — including advancements in treatment, innovations in care, and support for people in the CF community to lead fulfilling lives — that have changed the course of this disease,” Sullivan said. “We know how much we can achieve when we partner together, and we’ll continue working side by side to support people with CF no matter where they are on their journey.”
Sharing your journey this CF Awareness Month
The foundation is encouraging those affected by CF to talk about their journey on their social media channels. Topics can include the importance of community support and daily life with the disorder. The organization will also share personal stories on social media platforms Facebook, Twitter, and Instagram.
CFF is providing a number of Facebook cover photos along with an awareness month virtual background for video calls. It’s also offering facts to share such as, “Today, because of improved medical treatments and care, more than half of people with cystic fibrosis are 18 and older. Many people with CF can expect to live healthy, fulfilling lives into their 30s, 40s, and beyond.” Another fact reads, “Approximately 1,000 new cases of cystic fibrosis are diagnosed each year.”
The organization is asking participants to share a video about the cystic fibrosis community as well as posts from its CF Community Blog, including “Bonding Over Breathing,” “Finding Your CF Community,” “Redefining What Family Means, “Twin Sisters with CF Find Support in Each Other,” “How Going on Disability Led Me to Join the CF Community,” and “Making Lifelong Friendships with Other Moms of Kids with CF.
The CF Foundation supports a broad range of new research programs that aim to discover more, and more effective, treatments. Its $500 million Path to a Cure initiative focuses on three strategies to fight CF, a condition caused by CFTR gene mutations that result in a missing or dysfunctional CFTR protein — repairing the malfunctioning CFTR protein, restoring the protein when none exists, and fixing or replacing the CF-causing mutation to address the underlying defect in CF.
“Cystic Fibrosis can be an isolating disease. However, there are so many ways to get involved and connect with others who share similar lived experiences — whether that’s through a virtual event, on social media, or at a local event at your chapter. No matter how you choose to find community, we are stronger together,” the foundation explains on its awareness month webpage. “By sharing your experiences with cystic fibrosis, you can educate others about the realities of life with a chronic illness. During CF Awareness Month, the community comes together to help others learn about the disease, share personal stories, and unite behind our mission: finding a cure for all people with CF.”
The company Nebology is also offering tips for participating in awareness, including creating a T-shirt fundraising campaign and donating proceeds to organizations that fund research, and learning about the most recent treatments.
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