Tips For Never Missing Your Meds

In this Cystic Fibrosis Wind Sprint, Jerry Cahill talks about the importance of never missing your medication, especially post-transplant. To help him keep track of his meds, Jerry keeps color coordinated pill cases in his car with extra doses of medications in case he ever forgets to take them. He also keeps extra dosages in his backpack, which he carries with him everywhere, for the same reason.

The video wind sprint was made possible through an unrestricted education grant from Genentech to the Boomer Esiason Foundation.

Strangers Help Give Woman in Need of 2nd Double Lung Transplant Her Dream Wedding

“We’ve kind of realized that if we wait it might not happen,” she said.

Caleigh Haber has been dreaming of her wedding day for as long as she can remember, but she never realized it would come like this.

The 27-year-old, who has cystic fibrosis and is currently in need of her second double lung transplant, is about to marry the love of her life, Bryan Takayama. It’s an exciting celebration with a somber undertone.

Continue reading Strangers Help Give Woman in Need of 2nd Double Lung Transplant Her Dream Wedding

Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

Jerry reviews the various leg stretches and workouts he uses during an extended hospital stay. By working out regularly and keeping his legs nimble and strong, he knows that, as soon as he leaves the hospital, he can get back on his bike and back to training for his next adventure. Always remember – Continue reading Cystic Fibrosis Wind Sprint 58: Extended Hospital Stays and Leg Workouts

NIH Awards $8.6 Million for Bold Bid to Transform Lung Transplantation

http://www.newswise.com/articles/view/677465/?sc=mwhn

Researchers at the University of Virginia School of Medicine have received more than $8.6 million in federal grants to support efforts that could dramatically increase the number of lungs available for transplant – and then Continue reading NIH Awards $8.6 Million for Bold Bid to Transform Lung Transplantation

Podcast 172: Exercising While in the Hospital

In this podcast, Jerry Cahill reviews several ways that he stays active in the hospital in order to keep his lungs clear and discusses the importance of holding on to your routine.
https://www.youtube.com/watch?v=QEY7y3-rF40&feature=youtu.be

This video podcast was made possible through an unrestricted education grant from Gilead to the Boomer Esiason Foundation.

Subject: CF MiniCon: Transplant – May 21 Virtual Event for Adults With CF

This year the Cystic Fibrosis Foundation will be supporting three virtual events created by and for adults with CF to connect and share their experiences. In 2016, a group of adults with CF created BreatheCon, a two-day event that had a powerful effect in connecting community members. This year, in addition to BreatheCon, we are also introducing two CF MiniCons, which are one-day, topic-specific virtual events.

While last year’s BreatheCon was a pilot program, with 188 attendees and limited mostly to word of mouth promotion, this year we encourage you to spread the word about these virtual events to all adults with CF. Please note these events are open only to adults with CF (not to Care Center staff).

CF MiniCon: Transplant – May 21

On Sunday, May 21 from 6:00 – 9:30 p.m. Eastern Time, members of the CF community will be hosting CF MiniCon: Transplant, where adults with CF can have an honest and open dialogue about the transplant process.

This virtual event will include presentations, group chats, and small group video breakouts on a variety of aspects of transplantation that are unique to people living with CF. Discussion will focus on lifestyle, not on medical topics.

All adults with CF age 18 and over are welcome to attend CF MiniCon: Transplant. Registration is open now through May 18 at www.cff.org/minicon. For questions or more information, email  breathecon@cff.org.

Additional 2017 Events
Please be on the lookout for additional details on CF MiniCon: Young Adult Transition (July 22) and BreatheCon 2017 (September 8-9) in the weeks leading up to the events. If you would like to recommend someone from your community who has CF and is age 18 or over to help plan these events, or if you have any questions, please email Danielle Lowe Cipriani at dcipriani@cff.org.

We look forward to working with you to support virtual connections for people living with CF.

Thank you,
Drucy Borowitz, M.D.

Vice President of Community Partnerships

Please Join Us for a Free Private Screening of Up for Air at CUMC

Please join us for a FREE private film screening of
UP FOR AIR

Tuesday, May 9, 2017
6:00 – 8:00 PM

Reception followed by screening and Q & A with Jerry Cahill and the film’s Continue reading Please Join Us for a Free Private Screening of Up for Air at CUMC

Stream My Documentary, Up For Air, FREE this week!

We’re still celebrating Jerry Cahill’s 5 year post transplant anniversary by giving away his documentary, Up For Air, for FREE through April 30th!

Use discount code “BigAir” to stream!

CF Podcast 170: Jerry’s Five Year Transplant Anniversary

Jerry Cahill, 5 years post transplant, shares the ups and downs of his journey as an organ donor recipient.
https://www.youtube.com/watch?v=AcanwNW5A4k&t=8s

This podcast was made possible through an unrestricted educational grant from GENENTECH to the Boomer Esiason Foundation.

From Sustaining and Surviving – to Living!

By Andrea Eisenman

Seventeen years ago I was just going through the motions of trying to keep pushing towards each day with a schedule of treatments, eating, napping, lung bleeds and more treatments. Then starting all over again the following day with Continue reading From Sustaining and Surviving – to Living!