Just over 24 years ago, my son Gunnar was diagnosed with cystic fibrosis, a debilitating and unrelenting disease for which there is no cure. At the time of his diagnosis, CF was akin to a death sentence – there were no FDA-approved Continue reading Boomer Esiason: In search of a breakthrough for my son’s cystic fibrosis
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 firstname.lastname@example.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 email@example.com.
We look forward to working with you to support virtual connections for people living with CF.
Drucy Borowitz, M.D.
Vice President of Community Partnerships
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
By Mark Levine
Here we are again, on the precipice of another Great Strides Walk season. Not sure about you but I have already sent out my second email, a gentle reminder, to my entire list to increase the size of my team and boost my donations. It’s an exciting time of the year and a great event to be a part of that fulfills a lot in my Continue reading Maxing Out Your Strides – Mark A. Levine
NOVEMBER 5, 2017
STEP 1: REGISTER
To run for Team Boomer
STEP 2: INTERVIEW
with Team Boomer staffer Katie
STEP 3: RUN NEW YORK CITY! Continue reading Run the 2017 TCS New York City Marathon with Team Boomer
By Jen Weber
Almost seven years ago I took the bold step to a new life and underwent my first lung transplant. My first transplant and freedom to breathe easier offered opportunities for me to run Continue reading What it Means to Donate Life
The House of Representatives will soon vote on legislation that would jeopardize access to affordable and adequate health care coverage for people with cystic fibrosis.
The bills would effectively eliminate Medicaid expansion and alter Medicaid’s funding structure in a way that would reduce access to care Continue reading Tell Congress to Oppose the American Health Care Act
Howell Graham was the first Cystic Fibrosis patient at UNC to receive a double lung transplant that saved his life in 1990. Today, he looks back on what all he has been able to accomplish since the day of his Continue reading Double lung transplant patient reflects on life 26 years after lifesaving surgery
I was there. Yes, I went. I participated in the largest protest in the country. And it was AMAZING!
We like to avoid politics here at CFR so I will not voice any of the reasons I went. What I do want to do is talk about my experience as a person with CF.