Awareness Month aims to highlight resilience of CF community

Events slated throughout May across US, Canada, UK and Australia

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by Susie Strachan |

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A group of people of all ages gather together, all wearing or holding awareness ribbons.

This year, Cystic Fibrosis Awareness Month events are celebrating the resilience within the community affected by this rare disease, with advocacy groups encouraging it as a time to come together, support one another, and raise awareness about cystic fibrosis (CF).

During this month of May, U.S. and international organizations are aiming to help those living with CF to foster solidarity and resilience in the face of the challenges posed by this chronic condition.

In the U.S., the Cystic Fibrosis Foundation (CFF) is asking everyone to recognize the resilient spirit of the CF community: “Together, we can make CF stand for Cure Found,” the nonprofit suggests as a sample social media post.

Throughout the month, the CFF will be sharing stories on social media channels, with people in the CF community talking about what resilience means to them. The nonprofit also will encourage the community to share stories and resources within their own networks.

Another post suggested by the CFF is: “May is Cystic Fibrosis Awareness Month! Did you know? There are approximately 1,000 new cases of cystic fibrosis diagnosed each year.”

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The CFF also notes that nearly 40,000 people in the U.S., from every racial and ethnic group, have the genetic disease, which can affect the lungs, pancreas, and other organs. Symptoms can vary widely from patient to patient.

These and other CF facts are provided in sample social media posts that people can tweet, using #CFAwarenessMonth. Such messages also can be shared on Facebook and Instagram.

According to the nonprofit, there are a number of other ways people in the U.S. can participate in CF Awareness Month along with the foundation. These include joining fundraising events and walks, talking to friends and family about CF, and donating to research organizations to help advance treatments.

A number of Great Strides events — CFF’s largest national fundraising effort — are occurring throughout May in cities around the U.S. The program also features CF Cycle for Life, CF Climb, Xtreme Hike, and Team CF.

“The time is now. Together, we can cross the finish line,” Great Strides states on its webpage, saying the program “provides a fantastic opportunity for family, friends, students, and colleagues to come together and make a difference.”

Those participating may form corporate and/or family teams to help fight CF; the program aims to raise $34 million this year.

Elsewhere, Emily’s Entourage is following a theme of “Cross Out CF during the month of May, to highlight the need for developing more CF treatments, and to reflect the resilience of the cystic fibrosis community. Founded in 2011 by Emily Kramer-Golinkoff and her friends and family, the Pennsylvania-based nonprofit aims to accelerate research and drug development for the nearly 10% of CF patients whose disease is caused by rarer mutations and therefore do not benefit from CFTR modulators.

The annual Hike 2 Breathe, hosted by the Michigan-based Rock CF Foundation, is a virtual hike running the entire month.

“Last year, we saw so many incredible hikes, photos, and stories from the trail and we can’t wait to see what you all accomplish for this year’s event!” the event webpage states.

The Rock CF Foundation also hosts the Thunder Bay Thriller, a 62-mile race through the scenic northeast Michigan countryside and trail system, which will begin June 1 in Alpena. 

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In Canada, the Walk to Make Cystic Fibrosis History holds its 20th anniversary event on May 26. The Cystic Fibrosis Canada fundraising event aims to support those living with the disease, hold the memory of those lost to CF, ensure equal access to CF medications, and fund research into new treatments. 

On May 25, the South Saskatchewan Chapter of Cystic Fibrosis Canada holds its 40th annual Ride for the Breath of Life bike and running event through the Qu’Appelle Valley near the city of Regina, in Saskatchewan. 

In Australia, Cure4 Cystic Fibrosis — which raises funds for medical research into the disease — invites everyone to become part of its C4CF Army during the month of May. Options include holding a fundraiser, running or walking for those not wanting to host an event, and making donations to a charity of the giver’s choice.

Also planned is the International Conference on Cystic Fibrosis, to be held on May 23-24 in London.

That conference will bring together patients and experts to exchange experiences and research results in CF, as well as academic scientists, researchers, and research scholars. Participants will present recent innovations, trends, concerns, and practical challenges.

In June, the U.K.’s Cystic Fibrosis Trust is asking for participants to join in the “brightest, yellowest fundraising day of the year” on the 21st. Everyone taking part is urged to wear yellow and raise funds for research and to support the more than 11,000 people in the country living with CF.

The trust, which is celebrating its 60th anniversary in 2024, is planning a number of other events to mark the occasion. One is 60 for 60, which encourages people to think up fun challenges to raise funds, such as baking 60 cakes, swimming 60 lengths, or holding a quiz with 60 questions.

“We won’t stop until CF does,” the organization states on its website.