Fundraising, Education, Conferences Planned for CF Awareness Month

Patients, family, friends, and caregivers will come together this May for Cystic Fibrosis (CF) Awareness Month to educate the public about the condition and raise money for research and care.

A number of CF organizations have events planned throughout the month, including the largest U.S.-based nonprofit, the Cystic Fibrosis Foundation (CFF).

The CFF asks patients to tell their CF stories on social media to educate the public about the condition and advance the organization’s mission of finding a cure for CF. On its website, the CFF offers downloadable Facebook cover photos and shareable CF facts for Twitter. The website also includes community blog posts and a story about a teen’s journey with gastrointestinal issues that can be shared.

A number of Great Strides fundraising events will occur throughout May and the rest of the year in cities around the U.S., including in Minneapolis, Minnesota; Sandy Hook, New Jersey; San Antonio, Texas; and Sacramento, California. The full list of walks can be found on the CFF events page. In-person walks will adhere to the CFF’s event attendance policy, including wearing face masks, physical distancing, and inviting only one person with CF per event because of cross-infection risk.

Since Great Strides began, nearly $10 million has been raised for the organization and participants have walked more than 174,000 miles.

Beginning May 2, researchers working on gene editing, gene delivery, gene therapy, and gene insertion can apply to the CFF “Golden Ticket” Competition for which three winning applicants will be awarded one year of free laboratory space at Bakar Labs and access to CFF’s expertise, research tools, patient registry, and Therapeutics Development Network.

Cystic Fibrosis Canada will host its Walk to Make Cystic Fibrosis History throughout May to raise money for the foundation. Interested participants may choose to join in-person and virtual walks at 70 locations in Canada. Each person can set a fundraising goal and distance to walk or run before the end of May and invite others to join.

Across the Atlantic Ocean on May 11, the Cystic Fibrosis Trust will host its annual UK Cystic Fibrosis Conference. The hybrid event will focus on partnerships and collaborations in the CF research space. In-person tickets will be sold on a first-come, first-served basis. The standard in-person rate is £100 ($125) and £40 ($50) for virtual attendance. This conference is aimed mainly at the scientific community, though people affected by CF can register for free.

CF News Today will post a new story from a patient, caregiver, friend, or family member with CF every day of May for its “31 Days of CF” initiative. It will share full-length versions of the story on the website and Instagram page and shortened versions on Facebook and Twitter. Those affected by the disease — more than 30,000 people in the U.S. and 70,000 people worldwide — are encouraged to submit their story to [email protected] before May 10.

CF News Today also plans to host two Instagram live events — one mid-month and one at month’s end — to wrap up 31 Days of CF.

Marco Jiménez, a social media manager for BioNews, publisher of this website, said he has received positive feedback from readers for last year’s 31 Days of CF. Some of them decided to share their own CF experiences this year after reading about other people affected by the condition.

“In any challenge that you’re going through, finding these similarities with other people is really assuring and it makes it a little bit better,” Jiménez said. “Just putting your story out there and having other people feel connected it’s super important to give hope for others.”