Remembering self-care while caring for others

This title sounds much too obvious to blog about. But when a loved one is in need, it doesn’t usually matter, we make sacrifices to help them. And sometimes, can forget about our own needs in the process. Continue reading Remembering self-care while caring for others

Movie Crew Documents Ada Woman’s Fight To Live

ADA, Oklahoma – Doctors said she would only live to be 10. She’s now 22. An Ada woman’s fight against cystic fibrosis is so inspiring, it’s now the focus of a documentary. http://www.newson6.com/story/22786634/movie-crew-documents-ada-womans-fight-to-live Continue reading Movie Crew Documents Ada Woman’s Fight To Live

CF Podcast #123: Exercising with CF

“If it’s not important, breathe it out. What’s important, breathe it in.”

In this video, Emily Schaller, a 31-year old living, breathing, and succeeding with cystic fibrosis shares her life-changing relationship with exercise and her determination to spread awareness about Continue reading CF Podcast #123: Exercising with CF

Boomer Speaks Out on Sarah Murnaghan and Juvenile Lung Transplantation

Recently, Sarah Murnaghan (10) and Javier Acosta (11), both children battling cystic fibrosis, won federal lawsuits to be placed on the adult lung transplant list. The organ donation allocation system does not usually allow children under the age of 12 to be placed on the adult list, making it less Continue reading Boomer Speaks Out on Sarah Murnaghan and Juvenile Lung Transplantation

Adults with CF Need Close Colon Cancer Screening

With cystic fibrosis (CF) patients now living well into adulthood they are at risk for developing adenomatous colon polyps and should be screened early and often, researchers said here.

In a single center study where adult cystic fibrosis patients underwent screening colonoscopies, Continue reading Adults with CF Need Close Colon Cancer Screening

The Importance of Understanding

I just got to visit with a good friend from out of town who has CF. There is something to be said for being understood so well by another person. For someone to totally “get it” usually only happens when talking to another person who has something in common, in my case, cystic fibrosis and Continue reading The Importance of Understanding

Help us by Reviewing CF Roundtable for Great NonProfits 2013

The GreatNonProfits 2013 Top-Rated Awards are ready for nominations. Please help us earn a spot this year by entering your positive reviews. We could get the chance to meet with leaders in philanthropy and technology at the annual Technology for Social Good event in Silicon Valley, or Continue reading Help us by Reviewing CF Roundtable for Great NonProfits 2013

CF Podcast #121: Katie O’Grady – Playing High School Sports with CF

In this episode, we talk with Katie O’Grady, a 17-year old senior at North Rockland High School in New York. Katie is an avid runner and is a member of the Red Raider varsity cross country and track teams. She talks about the role sports and exercise have played in managing her CF, but Continue reading CF Podcast #121: Katie O’Grady – Playing High School Sports with CF

The Power Of Two” Is Coming To TV May 22!

Everyone in the cystic fibrosis community knows that it takes power to fight CF.  Twin sisters with CF Ana Stenzel and Isa Stenzel Byrnes, and other members of the CF community, show what power can do in the documentary film “The Power Of Two.”  Called “compelling” and “poetic” by Continue reading The Power Of Two” Is Coming To TV May 22!

The Winner of the Jacoby Angel Award is Jerry Cahill

Jerry Cahill has been awarded the prestigious Jacoby Angel Award from the United States Adult CF Association (USACFA) for being a person with CF who is making a difference in the lives of one or more people with or without CF. The award is named after Dr. Jack Jacoby who was a CF Continue reading The Winner of the Jacoby Angel Award is Jerry Cahill