Hawken Miller, features writer —

Mallory Smith was a poster child for cystic fibrosis (CF). She was a three-sport varsity athlete in high school, was accepted into Stanford University, and was consistent with her therapies, medications, and nutrition. Her smile and positive energy were felt by friends and family. On the inside, however, no…

Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…

Diagnostic odysseys are common for people with rare diseases. But for Terry Wright, it took 54 years of gastrointestinal pain, lungs clogged with mucus, countless emergency room trips to treat pneumonia, and surgeries to get to the bottom of a disease that should have been clear from the beginning:…

Proper representation in clinical trials has long been a challenge for minorities with rare diseases like cystic fibrosis (CF), risking — and often leading to — inequities in care and fewer effective treatments for these patients. To this end, members of the CF community, including patients, researchers, physicians, and…

The legacy of Mallory Smith, who died nearly four years ago from a cystic fibrosis-related superbug infection in her lungs, is living on in the form of raising awareness and funds for a novel treatment called phage therapy that might have saved her life.  Bacteriophages, or simply phages,…

When it comes to raising funds for cystic fibrosis (CF), the Cystic Fibrosis Foundation is committed to relentlessly pursuing research initiatives until “CF stands for cure found.” Last year, the foundation put a total of $218.1 million toward research and spent $80 million on its…

Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often are a lifelong after a transplant, require these people to add an extra layer of protection against viruses as common as a cold or as dangerous as COVID. They…

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.,…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

One need look no further than the name of the Cystic Fibrosis Foundation‘s Impact Grant program to figure out what it does — helping those affected by cystic fibrosis (CF) serve their disease community in creative ways that matter. The CF Foundation is currently accepting applications for the 2021 award…