We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

By: Jacob Greene

Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. Continue reading We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Full disclosure here; I’m writing this while doing my treatments. In fact, I just stuck a syringe into a vial of sterile water, drew some out and then injected it into vial containing powdered medicine. Continue reading OWN IT: Do People With Cystic Fibrosis Experience FOMO?

Perseverance, Resiliency and Erin Andrews

This morning I came across a story on MMQB about unbelievable year Erin Andrews is having.

As many may know, Erin Andrews, NFL on Fox’s lead sideline reporter, had been dealing with a crazed stalker in court. I cannot even imagine the stress that must Continue reading Perseverance, Resiliency and Erin Andrews

Making it Matter Ep. 15

Making it Matter Ep. 15 – Dating with Cystic Fibrosis

Julia and I received an email from a mom whose daughter has CF. She asked how might cystic fibrosis impact her daughter’s dating life as she gets older. Continue reading Making it Matter Ep. 15

Modern Love Column in NY Times–Worth Reading

My husband and I usually read the Social Qs column on Sundays in the New York Times. Then we glance at the rest of the Styles Section. He saw that the Modern Love column was about a double lung transplant that almost destroyed a Continue reading Modern Love Column in NY Times–Worth Reading

FREE, Limited-Time Support Tool for People With CF

CareForCF.com is a FREE limited-time support tool that can help patients navigate common CF challenges. This text-message program is designed for “on-the-go” individuals and is personalized to fit their needs. The tool delivers quick, helpful tips on improving communication with CF care teams, following Continue reading FREE, Limited-Time Support Tool for People With CF

Financial Support: Individual Counseling Services For the CF Community

CFRI’s CF Quality of Life Program
A Living Legacy of Peter & Kathy Judge

Through the Cystic Fibrosis Quality of Life (CFQoL) program, individual therapy is available to children and adults with CF as Continue reading Financial Support: Individual Counseling Services For the CF Community

Online: Beginning March 31, 2016 Mindfulness Based Stress Reduction Class for Those Diagnosed with CF

Register for CFRI’s 8-week Online Mindfulness Based Stress Reduction (MBSR) Class Open to Individuals Nationwide Diagnosed with Cystic Fibrosis!
Beginning March 31, 2016
Led by Dr. Julie Desch

  • MBSR combines body awareness, mindfulness meditation and hatha yoga to help those living with CF to address anxiety, depression, chronic pain, and stress.

Continue reading Online: Beginning March 31, 2016 Mindfulness Based Stress Reduction Class for Those Diagnosed with CF

Don’t Call Me That – Language is Power. Guest blog by Chris Kvam, Esq.

Five things we need to stop calling ourselves and why.

You know what the labels are: Patient. CFer. Cystic. Fibro/Cyster. Sufferer. It makes me cringe just to write them! I strongly dislike these words, and believe that our community would be better off if they were never said again. I see Continue reading Don’t Call Me That – Language is Power. Guest blog by Chris Kvam, Esq.

Fear Not–Guest Blog by Steph Rath

Know that the greatest fear is fear of the unknown.
Seek to meet the unknown with courage and a sense of adventure.
– Jonathan Lockwood Huie

Having CF means that you frequently have to deal with the unknown and the fear that can come with it. You might ask yourself “Will I be healthy enough to Continue reading Fear Not–Guest Blog by Steph Rath