Note: This story was updated May 3, 2021, to specify that the Cystic Fibrosis Foundation’s Great strides events are all virtual this year.
Throughout May, Cystic Fibrosis (CF) Awareness Month, people will connect to share stories on social media, participate in fundraising events across the U.S., and help bring greater public understanding of a disease estimated to affect more than 30,000 people in that country and 70,000 worldwide.
The Cystic Fibrosis Foundation will continue its Great Strides yearly fundraising event, in which CFF chapters host roughly 300 walks this month attended by about 125,000 people, according to its website. Specific events are posted on the foundation’s events page. This year, the walks are all virtual, with many chapters encouraging participants to walk on their own with members of their household on the day of the event or to use fitness trackers to create goals based on miles walked.
No live indoor events will be held due to the COVID-19 pandemic, the foundation states, and people taking part in outdoor events are advised to maintain safe distances. Masks are recommended.
Other types of outdoor events, including CF Cycle for Life, CF Climb and Xtreme Hike, will also be hosted by various chapters monthlong. In-person events will have related virtual content to accommodate patients, who must stay distanced from each other to avoid cross-infection.
CFF’s goal for these outdoor events is to raise $25 million to advance research into CF, and ultimately find a cure. These ongoing efforts to date have brought in more than $8.6 million.
With social media awareness, the CFF is asking patients, caregivers, parents, family, and friends to post personal stories related to the disease using the hashtag #FacesOfCF. The foundation is offering various Facebook cover photos, frames, and shareable facts for the community to use.
“CF Awareness Month is an important opportunity to educate people on the many faces of CF and deepen connections among people who are affected by this disease, as well as to recognize and celebrate the diversity that has always existed within the CF community,” said Sue Sullivan, head of community partnerships at the Cystic Fibrosis Foundation, in a statement to Cystic Fibrosis News Today.
Elsewhere, the Cystic Fibrosis Trust will host its annual UK Cystic Fibrosis Conference, where trust-funded research will be presented. The conferences is aimed at scientists and clinicians, but the public is welcome to sign up and follow the May 12 event online.
BioNews, the publisher of this site, will return with its 31 Days of CF initiative this month.
“Our 31 Days of CF series provides us with the opportunity to highlight a wide range of stories from people within this community. We’re excited to share these stories throughout May in recognition of CF awareness month,” said Kevin Schaefer, director of forums for BioNews.
Each day will feature a new post written by a person affected by CF on CF News Today’s Instagram page and website.
“We assume that to be sick with something so chronically progressive, we must have few passions or pursuits and that is rarely often the case,” said Bailey Anne Vincent, project manager for 31 Days and BioNews’ CF forum moderator. “The stories shared showed passion for everything from rescuing animals to being a good parent.”
BioNews also will host an Instagram Live on May 27 at 7 p.m. EDT, reflecting on the stories told throughout the month. Ally McGregor will host the discussion with columnists Tré LaRosa and Vincent, and CF forum moderator Jenny Livingston.
Others turn to music to help spread the word about CF. Claire’s Place Foundation for Cystic Fibrosis Support, created by late activist and motivational speaker Claire Wineland, held an Instagram Live concert and Q&A with Trevor Bahnson, who also has CF, to open the month.
The Cystic Fibrosis Research Institute, meanwhile, is encouraging people to dye their hair purple for to mark May. Participants can turn their hair purple either physically or digitally, and are asked to share a photo on social media with the hashtag #purplehairchallenge, and then challenge three friends by tagging them.
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