WVU Mountain State Cystic Fibrosis Center

WVU Mountain State Cystic Fibrosis Center WVU Mountain State Cystic Fibrosis Center 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.

Operating as usual

Cystic Fibrosis patients ages 16 and over are NOW ELIGIBLE for the COVID-19 vaccine at the Greater Monongalia County Vac...
03/11/2021
The Greater Monongalia County COVID-19 Vaccine Clinic

Cystic Fibrosis patients ages 16 and over are NOW ELIGIBLE for the COVID-19 vaccine at the Greater Monongalia County Vaccination Clinic; located in Morgantown! Click the link below and follow the prompts to schedule your appointment now!

https://wvumedicine.org/info/vaccine/

WVU Medicine – Morgantown, Monongalia County Health Department, Monongalia County Commission, and Mon Health are teaming up to offer a COVID-19 vaccine clinic

Cystic Fibrosis Foundation
12/18/2020

Cystic Fibrosis Foundation

Last week, the U.S. Food and Drug Administration authorized the first COVID-19 vaccine for emergency use in the U.S. for individuals ages 16 and older. Join us on Thursday, January 14 at 7 p.m. ET for a virtual town hall, where a panel of experts will share the latest information on the COVID-19 vaccine and answer the community’s questions.

Unable to watch live? All those who register will receive a link to the recording following the completion of the event.

Save your seat today ➡️ http://on.cff.org/COVID19-Town-Hall

What Is Compass?
11/17/2020
What Is Compass?

What Is Compass?

Cystic Fibrosis Foundation Compass is a personalized, one-on-one service that provides people living with cystic fibrosis, their families, and their care teams with a partner in dealing with challenges related to life with CF.

Hitting the Reset Button on My Life Because of Trikafta
10/14/2020
Hitting the Reset Button on My Life Because of Trikafta

Hitting the Reset Button on My Life Because of Trikafta

After years of hospitalizations and low lung function, I am now feeling healthy on Trikafta® -- so much so that I finally feel like I can reset the clock and start living my life.

Cystic Fibrosis Foundation
09/03/2020

Cystic Fibrosis Foundation

Getting regular exercise is important for everyone, but especially when you have cystic fibrosis. Thanks to Beam, it’s easy to maintain your fitness routine through on-demand sessions and live classes with fitness instructors alongside physical therapists who can adjust exercises for people with CF.

Over the past six months, Beam has helped dozens of members of the CF community stay active during the pandemic, and has now extended their offer for free access for adults with CF ages 18 and older through the end of 2020, while also exploring continuing this access into 2021. Sign up for Beam today to stay moving, connect with community members, and hear from leading clinicians.

Sign up: https://beamfeelgood.com

The recording of the CF virtual event recording is now available. During the event, a panel of experts discussed key con...
08/06/2020
CF Foundation | School Reopening and Cystic Fibrosis

The recording of the CF virtual event recording is now available. During the event, a panel of experts discussed key considerations for in-person and distance learning and answered audience questions.

As schools start to reopen, how can parents, students and households living with cystic fibrosis make the best decisions for them around distance and in-pers...

5 Ways to Keep Your Toddler Busy During Treatments
06/22/2020
5 Ways to Keep Your Toddler Busy During Treatments

5 Ways to Keep Your Toddler Busy During Treatments

Having trouble finding things to keep your toddler occupied during treatments for cystic fibrosis? Here are five tips that do the trick for my 3-year-old son, Major.

Don't forget to join us this Friday, June 5, for "Together: Celebrating 65 Years!" The cystic fibrosis community will ga...
06/03/2020

Don't forget to join us this Friday, June 5, for "Together: Celebrating 65 Years!" The cystic fibrosis community will gather virtually to celebrate all we have achieved together over the last 65 years and unite our focus to achieve our mission to find a cure for CF! During the event, we encourage you to connect with other attendees by using the livestream chat.

***You must be registered to participate, so sign up today at https://community.cff.org/vlc/live/38/page/218

Cystic Fibrosis Foundation
05/21/2020

Cystic Fibrosis Foundation

When you have cystic fibrosis, achieving milestones like graduating from school can have a more profound meaning.

But for the class of 2020, your ceremonies, celebrations, and parties have been put on hold. During CF Awareness Month, as we celebrate the CF community and your accomplishments, we encourage you to share your graduation photos with us—whether you're graduating from kindergarten, high school, trade school, or college.

Cystic Fibrosis Foundation
05/20/2020

Cystic Fibrosis Foundation

When 4-year-old Meiah’s newborn screening tests came back abnormal not once, but twice, her parents were concerned. Further testing at Phoenix Children's Hospital revealed she had a rare combination of CFTR mutations. For the first two years of her life, Meiah was sick nearly once a month with respiratory infections, but her family didn’t give up.

With guidance and support from her care team, Meiah began using a vest, doing regular treatments, and this January, received a G-tube. She now loves her "tubie," and showing her family and friends her superpower of being able to eat without having to put anything in her mouth.

Anette, Meiah’s mom, advice for parents of a child newly diagnosed with cystic fibrosis? "Trust your child’s doctor. Don’t let your fears hold your child back. Your child will still be a happy, beautiful being who is so much stronger than you will realize. They truly are resilient, even if we struggle with the 'what-ifs.'"

Calling all chocolate lovers!! Help support a great cause and have some delicious dessert!
05/15/2020

Calling all chocolate lovers!! Help support a great cause and have some delicious dessert!

Dessert & Donate
May is Cystic Fibrosis Awareness Month.
$2.00 from each Pancetta Brownie sold during the month of May will be donated to: Cystic Fibrosis Foundation

A house made chocolate brownie baked with pancetta (Italian cured bacon). Topped with caramel sauce and vanilla gelato.

Mountain State Cystic Fibrosis Center

What an opportunity! See post below for more information!
05/11/2020

What an opportunity! See post below for more information!

Team Boomer's Healthy at Home Grant is providing cystic fibrosis patients with at-home fitness equipment. Now more than ever, our team wants to ensure CF patients have the tools to stay active without putting their health at risk by going to a gym.

Apply here: https://www.teamboomer.org/athlete-of-the-month/fly-at-home-grant-program/

As we gear up for our virtual Pep Rally on Sunday, let's continue to raise awareness by sharing our Great Strides Spirit...
05/11/2020

As we gear up for our virtual Pep Rally on Sunday, let's continue to raise awareness by sharing our Great Strides Spirit on Facebook, Instagram, and Twitter. Don't forget to tag us!

First up - It is Motivational Monday- Share what motivated you to walk in Great Strides?

Even though we can't be together on Great Strides Weekend, we can still be together in spirit. As we gear up for our virtual Pep Rally on Sunday, let's continue to raise awareness by sharing our Great Strides Spirit on Facebook, Instagram, and Twitter. Don't forget to tag us!

Motivational Monday- What motivated you to walk in Great Strides?

T-Shirt Tuesday- Share a picture of your favorite Great Strides participant, Fighter or team shirt. Pets included!

Welcome Wednesday- Give a shout out to Teammates who have committed to supporting you at the walk.

Thank you Thursday- Thank your family members, friends, co-workers and local sponsors for their support.

PhotoFriday- Share a picture of your favorite Great Strides Memory. Share a team picture, walker picture or a pet picture.

Tag us on Facebook and Instagram!

05/10/2020
There will be a representative from Compass during this event! Great time to ask any insurance or employment related que...
05/06/2020

There will be a representative from Compass during this event! Great time to ask any insurance or employment related questions!

COVID-19 has raised a lot of questions in the cystic fibrosis community. Get the answers to the top questions we’re hearing from you at our next virtual event TONIGHT at 7 p.m!

Marissa Benchea, an adult with CF, will facilitate a discussion with our President and CEO, Mike Boyle, MD, and senior Compass case manager, Karen Carey about medical information, insurance, work, and financial challenges for people with CF and their families.

There's still time to register, and submit your question for a chance to have it answered during the event! https://on.cff.org/COVID19-QA

A special shout out and thank you to our wonderful nurses on our team, in our clinics, and in our hospital who take wond...
05/06/2020

A special shout out and thank you to our wonderful nurses on our team, in our clinics, and in our hospital who take wonderful care of our patients. 💗 thank you for all you do!

May is Cystic Fibrosis Awareness Month! We are stronger together!
05/01/2020

May is Cystic Fibrosis Awareness Month! We are stronger together!

WVU Mountain State Cystic Fibrosis Center
04/26/2020

WVU Mountain State Cystic Fibrosis Center

Our team is made up of many different members... Physicians. Nurses. Social worker. Physical therapist. Respiratory ther...
04/26/2020

Our team is made up of many different members...

Physicians. Nurses. Social worker. Physical therapist. Respiratory therapist. Psychologist. Dietitian. Pharmacist.

We have all been affected in some way by the COVID-19 pandemic but we want our patients to know that we are still here and we miss seeing you face to face.

💜 We are ALL in this TOGETHER. Take care, and we will see you SOON! 💜

Love, your CF Team. 💜

As always... #UntilItsDone 💙💛

Cystic Fibrosis Foundation
04/26/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Had enough of your streaming service? Can’t focus on a book? Stuck on your puzzle? Check out our suggestions for five programs that can help you stay physically and mentally healthy from the comfort of your own home while connecting with others living with cystic fibrosis: Beam, Cystic Fibrosis Fitness Institute, Health Advocacy Summit, sINgSPIRE from Breathe Bravely, and CF Yogi.

The AbbVie CF Scholarship program honors those who are thriving with Cystic Fibrosis. Click the link below to apply!
04/23/2020
AbbVie CF Scholarship

The AbbVie CF Scholarship program honors those who are thriving with Cystic Fibrosis. Click the link below to apply!

Learn how the AbbVie CF Scholarship honors young adults with cystic fibrosis as they pursue goals of higher education.

Cystic Fibrosis Foundation
04/21/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Did you miss the COVID-19 update at last week's ResearchCon? James Lawlor, an adult with cystic fibrosis and one of our ResearchCon co-chairs, shares his top takeaways from his conversation with our President and CEO, Mike Boyle, MD.

Cystic Fibrosis Foundation
04/15/2020

Cystic Fibrosis Foundation

Join us on April 22 from 7 to 8 p.m. ET as we come together virtually to share the thanks during National Volunteer Week. Adults with cystic fibrosis, family members, and care teams will share what they’re thankful for, and you’ll have the chance to share your gratitude with everyone helping to make CF stand for Cure Found.

Register here: https://on.cff.org/gratitude

Gunnar Esiason
04/14/2020

Gunnar Esiason

Clinic trial evaluating telehealth-based mental health intervention is RECRUITING adults with cystic fibrosis. More info:https://www.esiason.org/wp-content/uploads/2020/04/ACT-Telehealth-Flyer.pdf

Cystic Fibrosis Foundation
04/09/2020

Cystic Fibrosis Foundation

Talking to another person living with cystic fibrosis can be an invaluable resource. CF Peer Connect can match you with someone who has had similar experiences so you can make the connection that matters: a person who “gets it.” https://on.cff.org/CFPeerConnect

04/08/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

How have people with cystic fibrosis who have COVID-19 been doing? Our president and CEO, Mike Boyle, MD, provides an update of what we have learned.

Have a question about CF and COVID-19? In this series experts from the CF Foundation and the CF care community will answer the top questions we are receiving. Submit your questions in the comments below.

For more on CF and COVID-19: http://on.cff.org/COVID-19

We would like to invite you to take part in “Caffeine and Quarantine,” hosted by the CFF chapter! More details below!
04/08/2020

We would like to invite you to take part in “Caffeine and Quarantine,” hosted by the CFF chapter! More details below!

Calling all moms! We know you are facing unique challenges right now, and we want to give you the opportunity to connect with other CF Moms in our community to chat about whatever is on your mind, ask for suggestions and share what is working for you. So grab your beverage of choice and join us virtually for Caffeine and Quarantine on Friday at 10am. This event will be led by local CF Moms Kim Dunbar and Lindsay Soxman and will feature guest appearances by a local CF Care Center nutritionis. Comment below, email [email protected] or fiill out this form for the call-in information and instructions:
https://afasignup.formstack.com/forms/caffeinequarantine

Cystic Fibrosis Foundation
04/02/2020

Cystic Fibrosis Foundation

“For a lot of people staying home, not going anywhere, self-quarantining, isolation, and social distancing are really hard. How are they going to stay sane? How do you not get super depressed and anxious at a time like this? It can be very easy to allow yourself to go into a state of depression when you’re cooped up for too long of a period.”

Like many in the CF community, Holly Seay, an adult living with cystic fibrosis, is no stranger to isolation. Check out her 🔟 tips to get through spending time alone, and let us know in the comments what you would add.

Cystic Fibrosis Foundation
03/27/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

"Cystic fibrosis patients are part of the population who are most at risk during this pandemic because we have an underlying respiratory condition, but although we may be some of the most at risk, we are also some of the most prepared to live in quarantine and isolation."

Address

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

Telephone

(304) 293-1201

Website

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