WVU Mountain State Cystic Fibrosis Center

WVU Mountain State Cystic Fibrosis Center WVU Mountain State Cystic Fibrosis Center
(7)

As a chartered National Cystic Fibrosis Foundation member, WVU’s Mountain State Cystic Fibrosis Center has more than a decade of experience caring for children and with this debilitating disease. Our leading-edge research combined with our team approach results in the highest lung function for children with CF in the state. Because CF often affects many of the body’s organs and functions, and related complications can vary by patient age, our CF experts, other medical specialists, geneticists, counselors, and families work together as a team. This multi-specialty team approach ensures that the most comprehensive care is provided to each patient. Recognized as a CF site for excellence and leadership in CF care, the Mountain State Cystic Fibrosis Center is one of only 18 Cystic Fibrosis Foundation Therapeutic Development Network Centers in the U.S., reflecting our expertise and leadership in CF research.

If anyone watches the Bachelor, you may be familiar with Colton Underwood. He has a nephew who has cystic fibrosis, and ...
03/07/2019
Project Application Form — Colton Underwood Legacy Foundation

If anyone watches the Bachelor, you may be familiar with Colton Underwood. He has a nephew who has cystic fibrosis, and has set up a foundation in honor of him. His mission is to award 50 AffloVests in 50 states. In each state, one CF patient will receive an AffloVest. We would like to encourage any and all of our patients to use the link below to apply for an AffloVest, as West Virginia has not had a patient awarded one yet! Please call our office if you have any questions.

http://www.coltonslegacy.org/apply-for-the-legacy-project

The CFF has released this information on infection control in relation to the upcoming movie, Five Feet Apart.
03/06/2019
Five Feet Apart

The CFF has released this information on infection control in relation to the upcoming movie, Five Feet Apart.

"Five Feet Apart," a movie about two teens with cystic fibrosis, is slated for release in the U.S. in March 2019. The CF Foundation was not involved in the production of the film. However, we are hopeful that the movie will be a positive opportunity to increase awareness of CF and the challenges peo...

Our CF Team had a wonderful evening celebrating and fund raising for WVU Medicine Children’s Hospital.
02/10/2019

Our CF Team had a wonderful evening celebrating and fund raising for WVU Medicine Children’s Hospital.

The Family I Never Wanted
01/25/2019
The Family I Never Wanted

The Family I Never Wanted

When my daughter was diagnosed with cystic fibrosis, our nurse looked at me and said, “Welcome to the family!” Although I wanted to punch her otoscope lights out at the time, I think I’m finally starting to understand what she meant 13 years later.

My Feeding Tube is at its Best When I’m Feeling My Worst - Gunnar Esiason Blog
01/23/2019
My Feeding Tube is at its Best When I’m Feeling My Worst - Gunnar Esiason Blog

My Feeding Tube is at its Best When I’m Feeling My Worst - Gunnar Esiason Blog

Day four with my cold and I can see the faintest light at the end of the tunnel. I pull out all the tricks when I’m sick, but none more important than hammering away with my feeding tube. I’m the kind of person who hates eating when I get sick. I just have absolutely no…

01/21/2019

As the Federal shutdown continues, with many families potentially facing a second pay day and no check - particularly for those mandated to continue to work, realizing expenses with no pay - MVW would like to offer free vitamins. Any Center contacting us, where a patient or family is affected, we will provide free vitamins - no charge for vitamins; no charge for shipping.

Please contact our dietitican Jennifer Lowry 304-581-1956 to furthur assist you.

Cystic Fibrosis Life Hacks - Gunnar Esiason Blog
01/09/2019
Cystic Fibrosis Life Hacks - Gunnar Esiason Blog

Cystic Fibrosis Life Hacks - Gunnar Esiason Blog

It’s been awhile since I’ve listed a few “life hacks” I use to make my daily routine with CF a bit easier. I originally wrote about this a long, long time ago… so we’re in need of an update! The solo cup Plastic cups are how I stay organized while I’m doing treatments. I use…

Our Center is active in clinical trials. They are essential in the journey to make CF stand for Cure Found.
01/02/2019
Why Participate in a Clinical Trial?

Our Center is active in clinical trials. They are essential in the journey to make CF stand for Cure Found.

Clinical trials (or studies) are critical to developing new treatments for cystic fibrosis. When you are considering whether you or your child should participate in a clinical trial, you must consider the risks and the benefits.

Wishing you a Happy New Year from all of us at the Mountain State Cystic Fibrosis Center!
01/01/2019

Wishing you a Happy New Year from all of us at the Mountain State Cystic Fibrosis Center!

Wishing you & yours a happy holiday season!
12/26/2018

Wishing you & yours a happy holiday season!

12/19/2018
April's battle with cystic fibrosis

April was kind enough to share her CF journey with us. Watch the video below to see April's amazing journey.

*credit to Joe Catullo, for making this video

April Thompson thought her running days were over when she was diagnosed with cystic fibrosis in 2005. But, rather than dwell on it, she lives her life to th...

Hill-Rom
12/12/2018

Hill-Rom

You asked, we listened! Many patients have asked, “How does Monarch® System compare to The Vest® System for airway clearance therapy?” Well, the results are in. Take a look at this study showing how Monarch® System was comparable to The Vest® System for sputum production. http://mymonarch.com/practitioners

Cystic Fibrosis Foundation - Western Pennsylvania Chapter
12/12/2018

Cystic Fibrosis Foundation - Western Pennsylvania Chapter

Thank you to everyone who supports the CFF Partners in Progress. We met our $10,000 match goal! Thank you to everyone who participated to made this goal a reality. We STILL need your help to reach our goal of $80,000. Please make a gift TODAY! We will not stop until "CF" stands for Cure Found".
fightcf.cff.org/westernpa-anf

12/06/2018
Fight the flu

If you haven’t already, protect yourself and the ones you love this season-get your flu shot. We are proud of Dr.Costello for educating the public on the importance of getting vaccinated.

Dr. Lisa Costello, a WVU Medicine pediatrician and assistant professor at the School of Medicine, is encouraging everyone to get a flu shot this season. Nati...

We are working hard to improve our process for transition from pediatric to adult care. Here is one patient’s perspect...
12/04/2018
Facing My Fears About Transitioning to an Adult Care Team

We are working hard to improve our process for transition from pediatric to adult care. Here is one patient’s perspective.

I dreaded transitioning from my pediatric care center to my adult care center. I was stubborn and knew that I did not want to go. I thought I knew best, that is, until one phone call changed my entire perspective.

A great way to recognize someone important in your life! Nominate a special caregiver (parent, spouse, significant other...
11/29/2018
Recognize a CF caregiver

A great way to recognize someone important in your life! Nominate a special caregiver (parent, spouse, significant other, sibling, grandparent, etc) today! 💜💜

Learn how to celebrate this special part of the CF community.

#WVUdayofgiving
11/15/2018

#WVUdayofgiving

Hill-Rom
11/14/2018

Hill-Rom

Sharing some solid life perspective today from @good_ole_cworth. "CF doesn't define me, but it's the reason I am who I am. It's the reason I look at life the way I do, it's why I feel everything a little deeper, love a little harder and often catch myself enjoying the little moments in life that most overlook." 🙌💙🦋 #cfwarrior #mymonarch #cysticfibrosis #cf #cysticfibrosisawareness #65roses #sixtyfiveroses #airwayclearance #hillrom

Excited to participate in the CF Advanced Practice Provider Advisory Board.
11/09/2018

Excited to participate in the CF Advanced Practice Provider Advisory Board.

Absolutely fantastic session at NACFC. Building and Enhancing Care Partnerships: Skills and Strategies for Health Care P...
10/19/2018

Absolutely fantastic session at NACFC. Building and Enhancing Care Partnerships: Skills and Strategies for Health Care Professionals. Wonderful discussion with a provider and patient panel.

Gunnar Esiason
10/19/2018
Gunnar Esiason

Gunnar Esiason

Day one of the North American Cystic Fibrosis Conference is in the books! Here's my recap... things I LOVED, things that made me scratch my head and more from Day 1 of the conference, from infections, to exercise, alternative remedies and more! Remember the Salty Cysters and I will be recording LIVE podcasts throughout the rest of the conference over on the Boomer Esiason Foundation's page! #cysticfibrosis #NACFC #NACFC2018

http://www.gunnaresiason.com/north-american-cystic-fibrosis-conference-day-1-recap-podcast/

Good morning from Denver! We are beginning Day 2 of conference and we’re so excited to be learning all the new advance...
10/19/2018

Good morning from Denver! We are beginning Day 2 of conference and we’re so excited to be learning all the new advancements in CF care!

We are so proud of Erin for presenting at the North American Cystic Fibrosis conference! Way to represent mountain state...
10/18/2018

We are so proud of Erin for presenting at the North American Cystic Fibrosis conference! Way to represent mountain state CF center!!

10/15/2018
WVU Health Sciences

WVU Health Sciences

It's flu season! What does that mean? How can you stay protected?

It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason B...
10/12/2018
It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason Blog

It is Possible to be 100% Compliant With Your CF Treatments – You’re Wrong If You Think Otherwise - Gunnar Esiason Blog

Is it a pain in the ass to find time do treatments? Is it annoying to spend hours each month on the phone with pharmacies and the insurance company? Have you stuck yourself far too many times with a syringe while trying to reconstitute a medication? Have you ever considered skipping a treatment just...

Gunnar Esiason
10/10/2018

Gunnar Esiason

It's #WorldMentalHealthDay and while my 'social' presence may not show it, I have suffered from #cysticfibrosis related #mentalhealth issues for the better part of my life.
- anxiety
- stress
- feelings of guilt
- loneliness
- intense pressure
- frustration
- nightmares
⭐️⭐️⭐️
It shouldn't come as a surprise to you, but medical trauma leaves not only physical scars, but also emotional ones, too. Over the past 5 years, I have gone through more than 20 invasive medical procedures and have seen my health decline far more rapidly than I ever thought it would
⭐️⭐️⭐️
People living with CF are at a significantly greater risk for mental health problems than the general public, and I'm no different than the statistics show. For many years, mental health was overlooked in the CF population and it's starting to take its toll as we grow older. Adults living with CF, like myself, have been through hell and back... and many of us do not have appropriate resources at our disposal to help us sift through years of horrible medical experiences, increasing illness and the mayhem that comes along with chronic illness.
⭐️⭐️⭐️
From the outside, it may not look like we're weathered souls who have seen the gates of hell, or have had to learn to come to grips with terminal illness... but we have. Mental health is just as much a part of cystic fibrosis as respiratory health is.
⭐️⭐️⭐️
If I've learned anything in working to remedy some of my issues, it's that it is okay to ask for help (from care teams, families, friends, etc.). Medical trauma is a real thing, and it was very validating to learn that I wasn't alone in failing to effectively cope. Utilizing what few tools we have for people with cystic fibrosis dealing with mental health issues has helped tremendously, but we still have a long way to go. We desperately need more effective treatment plans and diagnostic instruments.
⭐️⭐️⭐️
Finally, if you're living with chronic illness and think you might be struggling with mental health problems, ask for help. Push your care teams and the organizations representing your community to prioritize mental health and to search for new ways to help patients cope

Anyone who is interested in live streaming the 32nd annual North American CF conference can enroll below! The dates of t...
10/10/2018
The 32nd Annual North American Cystic Fibrosis Conference (NACFC) Livestream

Anyone who is interested in live streaming the 32nd annual North American CF conference can enroll below! The dates of the conference are October 18-20.

The North American CF Conference (NACFC) is a scientific and medical conference for professionals in the field of CF research and care. This...

Hill-Rom
10/01/2018

Hill-Rom

It's #MonarchMonday! Enjoy the freedom...and the view! @cf_adventurerlife.
.
.
.
The Monarch® Airway Clearance System.
.
.
.
#wanderlust #mymonarch #cysticfibrosis #cf #cysticfibrosisawareness #cfwarrior #65roses #sixtyfiveroses #airwayclearance #hillrom

The Monarch is here!
09/28/2018
Monarch Airway Clearance Vest Makes Traveling So Much Easier - Gunnar Esiason Blog

The Monarch is here!

I have had my Monarch Vest for about 5 months or so now, and the absolute best part about it is how stress-free traveling has become. Cystic fibrosis should never serve as a deterrent to informed travel choices, but I’ll be the first to admit that chronic illness can definitely be a stress point. ...

If you would like to try the Monarch, or get more information, contact us!
09/25/2018

If you would like to try the Monarch, or get more information, contact us!

Psst...People who own the Monarch® System rated their likelihood to recommend it to a friend as 9.8 out of 10.* Pass it on!
.
.
.
* Data from Hill-Rom surveys to those who have received a Monarch® System, May-July 2018, with 10 being extremely likely and 0 not at all likely to recommend.
.
.
.
#truefact #mymonarch #cysticfibrosis #cf #cysticfibrosisawareness #65roses #sixtyfiveroses #airwayclearance #hillrom

Important information on the Vog Masks.
09/20/2018
Which Respirator I use and Why - Gunnar Esiason Blog

Important information on the Vog Masks.

Yesterday I posted this selfie from my flight to Boston: A few things to note: Grown men do, in fact, take selfies My choice in surgical mask is a bit… unique Airplane cabins are not conducive to people over 6’0 I’ve since gotten a number of questions about the mask. Generally I use a mask…

YOU'RE INVITEDPeople with CF age 18 and older are invited to BreatheCon, a virtual event created by and for the CF commu...
09/05/2018
BreatheCon

YOU'RE INVITED
People with CF age 18 and older are invited to BreatheCon, a virtual event created by and for the CF community.Visit cff.org/BreatheCon For more information and to register

The third annual BreatheCon is a two-day event for adults with cystic fibrosis that will provide a virtual space to connect, share, participate in fun activities, and learn from others with CF. BreatheCon will take place on Sept. 28-29, 2018.

08/15/2018
Growing WVU Medicine Children's

The new WVU Medicine Children's commerical, featuring one of our very own CF Doctors!

Coach Dana Holgorsen and former WVU Quarterback Jeff Hostetler joined us to kick off the campaign for the new WVU Medicine's Children's Tower and Women's Pav...

Dr.Moffett and Dr. Pastuch presenting during WVU department of Pediatrics grand rounds
08/15/2018

Dr.Moffett and Dr. Pastuch presenting during WVU department of Pediatrics grand rounds

Cystic Fibrosis Foundation
08/11/2018
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Learning that your child has cystic fibrosis can be overwhelming, scary, and so much more. Today, Elaine Ruh, who has a toddler with cystic fibrosis, shares that while she and her husband were initially shocked by the diagnosis, they are moving forward with an entire team of supporters.

Cystic Fibrosis Foundation
08/07/2018
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Exciting news for the cystic fibrosis community! The U.S. Food and Drug Administration has approved lumacaftor/ivacaftor (Orkambi) for children living with CF ages 2 to 5 who have two copies of the most common CF gene mutation, F508del. Today’s approval means that about 1,300 additional children are eligible to receive the drug.

Address

One Medical Center Drive P.O. Box 9214
Morgantown, WV
26506

Telephone

(304) 293-1201

Website

Alerts

Be the first to know and let us send you an email when WVU Mountain State Cystic Fibrosis Center posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Videos

Nearby universities


Other Colleges & Universities in Morgantown

Show All