By Jeanie Hanley MD, President of USACFA and
John Mercer, BreatheCon 2017 Co-Chair
Sign up today for this FREE virtual event for adults with cystic fibrosis.
Our USACFA director, Mark Levine, is a featured Keynote Speaker on Friday and our CF Roundtable columnists, Aimee Continue reading Sign up for BreatheCON Sept 8th and 9th!
The sea is miraculous. Just the sight of the seemingly boundless body of water is humbling for many. And in the 18th century, the ocean was often regarded as a panacea, with doctors prescribing drinking a pint of sea water to cure Continue reading These are the health benefits of spending time by the ocean
The past few days for Julia have been rough! She was dealing with the stomach flu, but now she’s better (yay!). So in order to get her back on her feet, we decide to launch the first ever Making it Continue reading Making it Matter Ep. 31—Julia Recovers From the Stomach Flu
Drug discovery and development in the cystic fibrosis community is moving at an incredible pace. With that, though, comes a feel of stress or anxiety, as the science behind all of this is both complex and constantly moving through seemingly never ending clinical trials. For Continue reading Making it Matter Ep. 27 – Can Drug Development be a Stress Point?
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?
Julia and I take a question from my most recent Facebook Live on the Boomer Esiason Foundation page, which asks about the progression of cystic fibrosis and how we deal with it.
Since cystic fibrosis is a progressive disease, it can take an emotional Continue reading Making it Matter Ep. 24 – Dealing with Disease Progression
The oceans are full of molecules capable of treating many diseases. One of them, roscovitine, could be effective against cystic fibrosis, a rare genetic disease that affects nearly 6,500 French. It is currently being evaluated. Continue reading Cystic fibrosis: a treatment could nest in the starfish
Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase
We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here:
About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.
The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.
Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.
Learn more about Up For Air here.
Own It Audio Podcast Ep. 9 – Feeling Great When You’re Sick
In this episode of the Own It Audio Podcast, you will meet Kate Arian. She’s 27 with cystic fibrosis, and just about to celebrate the 5 year anniversary of her Continue reading Own It Audio Podcast Ep. 9
6 Tips for Standing Back Up After Being Knocked Down — Guest Blog By Emily Kramer-Golinkoff
Originally posted on Emily’s Entourage, on July 27, 2015
The other week, I got some disappointing news at the doctor’s. I have to be honest, it caught me off guard and knocked me down. It also got me thinking about life, the punches it can throw, and how to get back up with strength, conviction and authenticity.Here are 6 tips for standing back up after being knocked down:
Continue reading 6 Tips for Standing Back Up