The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Invitation to Participate

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) is a patient engagement project that provides women with CF the opportunity to be equal partners with healthcare professionals to shape the future of CF research.  CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF.  CFReSHC holds monthly virtual meetings on topics that impact the lives of women with CF like contraception, family building, hormone influences on CF, incontinence and menopause.  As we enter our third year, CFReSHC is looking for women with CF who are passionate about sexual and reproductive health research to join our collaborative who can commit 4-6 hours a month and we provide  a small honorarium for your time commitment.

CFReSCH is looking for a:

  Social Media Strategist who has connections in the CF community or who is willing to engage with the CF community on our behalf.  CFReSHC currently has a social media presence on Facebook, Twitter and Instagram and the applicant would need to be able to post 2-3 times per week as well as check the platforms regularly and make responses as needed.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Grant writer and Coordinator who has connections in the CF community or is willing to connect with the CF community and engage it to seek out funding opportunities for potential grants.  The applicant would need to maintain a database of potential grant opportunities.  An applicant who has experience writing applications is preferred.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Women with CF are welcome to send a letter of interest to: cfreprohealth@gmail.com.  Together, we will respond to the health needs of the CF community by providing data for healthcare professionals to pave the way for improved sexual and reproductive health resources, healthcare, and knowledge.

Join in BreatheCon 2018!!

Calling all adults with CF!

Join me at #BreatheCon 2018! Step back from your day-to-day routine and connect with other adults with #cysticfibrosis to discuss topics that are unique to #lifewithCF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.
https://cff.swoogo.com/BreatheCon2018

CF Foundation | BreatheCon 2018

Registration is open for BreatheCon! Step away from your day-to-day routine and connect with other adults living with cystic fibrosis to discuss topics that are unique to life with CF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.Register today: https://on.cff.org/BreatheCon2018

Posted by Cystic Fibrosis Foundation on Tuesday, August 28, 2018

The Year Ahead – Fall 2018 Scholarship Winner Guest Blog

By Roberto De La Noval

The next year is going to be a big one. I am writing against the clock to meet deadlines for my dissertation, sending out a book manuscript to a publisher, writing my first book review for an academic journal, presenting for the first time at a national conference…and all that on top of my first semester, in the Spring, of teaching undergraduates. Suffice it to say I’ll be busy. I wouldn’t have it any other way, though. Finally—at last—I feel like less of a perpetual student (I’ve been in higher education almost 12 years) and more like someone actually enjoying the first fruits of his career. That’s why I’m grateful to be one of the recipients of this year’s Lauren Melissa Kelley Scholarship; graduate school isn’t cheap, and so these funds will be of immediate help to me.

For example, I travel to one or two academic conferences a year, and often I cannot get the university to recompense me for all of the travel. That means that some of it comes out of pocket for me. The LMK scholarship will help me recoup these costs and make it more likely that I will pursue these opportunities to engage in the academic community and share my work. Another way the LMK scholarship will make a big difference is in allowing me to continue my language education. Now that I no longer am in coursework, the simplest way for me to continue improving my languages (German and ancient Greek are the ones I’m currently working on) is to have a private tutor who can work around my dissertation-writing schedule. These lessons are not cheap, but they significantly and rapidly help me improve my language skills, which in turn allows me to access more material for my scholarship and makes it possible for me to become a truly international academic who can engage with people from various parts of the world. It would be a welcome financial relief to know I have funds to continue my education now that I have finished formal coursework and am expected to be writing a book! In short, this is a critical period in my career of transition from student to scholar, and the LMK scholarship will facilitate this ctransition with greater ease.

In many ways the academic life is well tailored for someone negotiating the scheduled and regimented life cystic fibrosis demands. And I am happy to say that I’ve encountered nothing but support and encouragement from my faculty and colleagues when it comes to managing both my illness and my career. But it’s also a support in my work and life to know that so many others with CF are living their lives to the fullest, and that behind them there is a huge community of people who care about people with CF and work incredibly hard, often behind the scenes, to make a rich life possible for them. CFRoundtable and the LMK Scholarship are outposts of this amazing community of doctors, researchers, social workers, advocates, speakers, families, and friends. I relish the opportunity to be on the receiving end of their care, and I cannot wait to pay it forward in whatever way I can.

USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

By: Laura Mentch

Our story begins with Lisa McDonough, a young woman with CF. Lisa wanted to find a way for people with CF to connect with each other and share their thoughts and strategies related to living with CF. In 1989 she singlehandedly produced 4 issues of Roundtable, a newsletter for adults with CF. Lisa knew that she benefited from talking to people with CF on the phone or in CF clinic and she wanted other adults with CF to benefit from connecting and sharing information about living with CF, medications, and staying healthy. Continue reading USACFA History: How a group of adults with CF helped create a community without computers, email, or the internet

To My CF Friends:

I want to tell you all about some amazing people.

Several years ago, in 2009, I was lucky enough to meet and connect with another woman near to my age in New York who was also going through the transplant evaluation process. She Continue reading To My CF Friends:

How to Grow

When I was growing up in the 1980s, it sometimes seemed tough to find adult role models who also shared my disease to show me what it looked like to be a “grown up” with cystic fibrosis. We didn’t have widespread access to the internet in those days, and even the Cystic Fibrosis Foundation’s Great Strides walk to cure CF wasn’t started until 1989, so the primary point of connection with other people with CF was the clinic waiting room, which didn’t exactly lend itself to deep conversations. Many people in my generation were lucky enough to attend one of several CF camps operating back then – bustling hives of campers and counselors where kids with CF could bond over shared illness and shared laughter, all while gleaning wisdom and support from older participants – but I was heavily into competitive horseback riding and never attended those summer getaways.

So, as you can imagine, I clung fiercely to those CF mentors who did find their way into my inner circle. There was the woman from my small(ish) hometown who had CF and a successful pregnancy after the doctors warned her not to, and from her I learned that sometimes pushing boundaries can have incredible results. She and her son are still thriving today – and I now kind of love seeing her smiling face pop up on my Facebook feed. There was another young woman in her 20s who attended the American Airlines Celebrity Ski event along with myself and two other girls my age with CF. She was far sicker than anyone I had ever known with CF, and yet she showed up every year (sometimes with a PICC line in place, her oxygen tubing snaking off her too-thin frame) – until one year she didn’t and I experienced one of my first lessons in the brutal reality of the CF monster. In her I recognized the importance of connection, of showing up, and of grace under fire. I also remember her snarky, somewhat irreverent sense of humor, and how I promised myself that I, too, would find laughter in the shadows. And there was a young man, pushing himself through college as I tried to adjust to high school with CF. He and I often shared a “suite” in the hospital (two single rooms connected by a shared bathroom – what passed for infection control in the 1990s) and I would watch him with his open textbooks sitting at the nurse’s station to use the ward’s sole patient computer. I was impressed by his dedication, especially as he continued to struggle with his health, though I sometimes wondered what he planned to do with his degree once his frail body earned it. He was the one who told me, shortly before his graduation, that having goals despite an uncertain future was an end unto itself. Through his example, I realized that taking a leap of faith is worth it, nowhere how you land.

As I grew older with CF, through college and law school and my career and transplant, I found other ways to connect with the CF community. I discovered Cystic Fibrosis Research, Inc, the CF Roundtable newsletter, the CFF’s Young Professionals Leadership Committee, Cystic-L, and, of course, the internet. I met more and more adults with CF who were (and are!) challenging norms, defying expectations, and pushing themselves in ways that inspired and delighted me. I’m proud to say that I can now place myself securely in the company of a thriving adult community, which is good, because I have many, many more lessons to learn.
But I still remain grateful for those early lessons, from mentors who probably didn’t even know important their guidance was to me at the time. I often wonder what the examples we set today will mean to those coming of age now, as this amazing adult community continues to grow – together.