WVU Mountain State Cystic Fibrosis Center

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

Boomer Esiason Foundation
01/27/2020

Boomer Esiason Foundation

🎓📚💸New year, new Boomer Esiason Foundation scholarships! 💸📚🎓

Don't miss out on your chance to apply for one of the many scholarships we offer to students with cystic fibrosis.

See our full list of scholarships, here: befscholarships.com

Cystic Fibrosis Foundation
01/15/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Considering enrolling in Medicare? We can help. Watch Navigating CF: Understanding Medicare to hear from insurance experts, our Compass case managers, about the basics of Medicare, the different types of coverage options, who can benefit from Medicare, how to enroll, and more.

Learn more and watch the video ➡️ https://on.cff.org/navigatingcfmedicare

Fantastic community resource!
01/14/2020

Fantastic community resource!

01/11/2020

The staff at the Mountain State Cystic Fibrosis is honored to care for the CF families and patients in our state and beyond. We must share on this platform that if you have friend requested a staff member on Facebook and they have not accepted it, it is because it is against our institution’s policy for staff members to accept friend requests from patients or their family members. Please do not make personal friend requests on this platform. We value the relationships we have with our patients and never want them to feel otherwise.

Cystic Fibrosis Foundation
01/10/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

"I urge other CFers to seek help. I finally found a counselor that I mesh with, who doesn't just nod their head at me, who pushes me, who calls me out, and who sees my worth, and tells me that they are proud of me for getting up in the morning and continuing this everyday battle."

01/09/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Working together with the cystic fibrosis community for 65 years, we have made unparalleled progress focused on a shared mission: to cure CF and provide all people with CF the opportunity to lead long, fulfilling lives. Today, our most important and challenging work is ahead of us.

Mike Boyle, President and CEO, shares the Foundation’s vision for the future, and our top priorities for the next five years as we work to advance our mission and make CF stand for Cure Found.

Learn more about the Foundation’s strategic plan ➡️ https://on.cff.org/5yearplan

Cystic Fibrosis Foundation
01/06/2020
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Do you have any rituals you do before your quarterly clinic visit or PFT?

Cystic Fibrosis Foundation
12/24/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Holiday foods may be wonderful to eat, but they can also be very high in fat. Suzanne Michel, M.P.H., RD, LDN, a registered dietitian and CF nutrition specialist, shares her tips for managing enzyme intake during the holidays. https://on.cff.org/2Zjqfpk

Cystic Fibrosis Foundation
12/12/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Children starting school can be nerve wracking for any parent, but when your child has cystic fibrosis, it can cause even more anxiety. Will the teachers give him the enzymes? Will the other kids look at him differently for taking them? Elaine Ruh, mother to a child with CF, shares how she prepared her son and his teachers to continue his CF care routine at school.

11/21/2019
Cystic Fibrosis Health Insurance Study

The 2019 CF health insurance survey is now open! The survey should take no longer than 15 minutes to complete and respondents will receive a $10 Amazon gift card for their time!
Participation in this survey is critical to help educate the CF foundation on how to best represent people with CF and their families. Please click the link below to complete the survey.

Qualtrics sophisticated online survey software solutions make creating online surveys easy. Learn more about Research Suite and get a free account today.

Our center director Dr. Moffett presenting at NACFC this morning.
11/02/2019

Our center director Dr. Moffett presenting at NACFC this morning.

Cystic Fibrosis Foundation
11/01/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Didn’t catch the livestreams of Plenaries 1 & 2 from NACFC? Dr. JP Clancy, vice president of clinical research for the Foundation, shares why we are at a pivotal time in cystic fibrosis.

Our pharmacist Lisa presenting her research poster at the CF conference! Way to go Lisa!
10/31/2019

Our pharmacist Lisa presenting her research poster at the CF conference! Way to go Lisa!

Congratulations to our RT Brittany on receiving the Kristin McFall award at NACFC this year! We are so grateful she is p...
10/31/2019

Congratulations to our RT Brittany on receiving the Kristin McFall award at NACFC this year! We are so grateful she is part of our care team!

10/28/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Mark your calendars! Tune in for a livestream of Plenary 1 at NACFC on Thursday, October 31, to learn about new research to develop cutting-edge therapies, including novel approaches for people with nonsense and rare mutations. You’ll hear about the promise of genetic therapies, the challenges and opportunities ahead, and what success looks like as researchers pursue a one-time cure.

10/24/2019
Cystic Fibrosis Foundation

This should be a great resource for those with questions regarding the new modulator.

Due to high demand, the Trikafta Community Q&A Webinar will also be broadcast on Facebook Live.

Michael Boyle, MD, SVP of Therapeutics Development, Mary Dwight, SVP of Policy and Advocacy, and Bruce Marshall, MD, SVP of Clinical Affairs, will discuss the research behind the triple combination therapy, questions around access, and how this breakthrough is expected to impact the health of those approved for the drug.

What exciting times it is in the CF community with Trikafta being approved! This drug is for patients 12 and older with ...
10/22/2019
CF Foundation Celebrates FDA Approval of Triple Combination

What exciting times it is in the CF community with Trikafta being approved! This drug is for patients 12 and older with one copy of del508. This includes patients with 2 copies and those patients with one del508/unknown with a diagnostic sweat. Please be aware that as this has JUST BEEN APPROVED it is likely that drug will not be available and in pharmacies for distribution until the middle of November.

The U.S. Food and Drug Administration has approved the use of the triple-combination modulator elexacaftor/tezacaftor/ivacaftor (Trikafta™) for people with cystic fibrosis ages 12 and older who have at least one copy of the F508del mutation.

10/21/2019

Make sure to tune in to the Today show today during the third hour. Author Andy Lipman will be speaking about his book The CF Warrior Project!! 💜💜

Taking orders until November 1st. Send orders via PayPal to: nhoover2013@gmail.com In the notes, please indicate what yo...
10/03/2019

Taking orders until November 1st.
Send orders via PayPal to: [email protected]
In the notes, please indicate what you’d like to order!

09/25/2019
cfexchangestage.blob.core.windows.net

Cystic Fibrosis Research Inc offers an online facilitated support group for adults with CF (18 years +). Click the link below for more information.

Cystic Fibrosis Foundation
07/22/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Today, the first triple-combination therapy for cystic fibrosis was submitted to the U.S. Food and Drug Administration for review. Vertex is seeking an eight-month priority review versus the traditional 12 months.

Cystic Fibrosis Foundation
07/08/2019

Cystic Fibrosis Foundation

Going on vacation when you have cystic fibrosis comes with a lot of extra baggage between your vest, extra medications, and more. If you're traveling this summer, share your tips in the comments below for taking a trip when you have CF.

07/05/2019
Cystic Fibrosis Foundation

“Because we are stronger together, we’ll keep fighting #untilitsdone”

#untilitsdone #strongertogether #fightcysticfibrosis

Because of you, we imagine what's possible.
Because of you, we are making new connections.
Because of you, we continue to push the boundaries.
Because of you, we are stronger together.

Cystic Fibrosis Foundation
07/04/2019

Cystic Fibrosis Foundation

Happy Fourth of July! We wish everyone a safe, happy, and healthy holiday. 🎆

For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as are nebuliz...
06/25/2019
How Compass Helps People With CF and Their Families

For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as are nebulizers and vests. Cystic Fibrosis Foundation Compass is here to help you understand your insurance options so you can make the most well-informed decision about your coverage as possible.

Cystic Fibrosis Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.

Our team had a great time at the escape room today!
06/21/2019

Our team had a great time at the escape room today!

FDA Approves Symdeko for Children Ages 6 to 11
06/21/2019
FDA Approves Symdeko for Children Ages 6 to 11

FDA Approves Symdeko for Children Ages 6 to 11

The U.S. Food and Drug Administration has approved the use of tezacaftor/ivacaftor (Symdeko®) for children with cystic fibrosis ages 6 to 11 with specific mutations.

Cystic Fibrosis Foundation
06/18/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

Congratulations to Lauren Luteran, a 19-year-old contemporary dancer living with cystic fibrosis, who received a ticket to the academy after her performance last night on So You Think You Can Dance! 💃

Watch this video from Fox 35 WOFL to get to know a little more about Lauren, and her experience auditioning for the show.

Please join the 65 Roses Baseball Club and join the fight against cystic fibrosis as we cheer on the Bucco's! Fans will ...
06/17/2019
65 Roses Baseball Club

Please join the 65 Roses Baseball Club and join the fight against cystic fibrosis as we cheer on the Bucco's! Fans will enjoy a pre-game tailgate party filled with friends, food and FUN! All fan levels will meet July 3rd to meet hosts Greg Brown and Steve Blass for an exciting, private reception before cheering on the Bucco's as they take on the Chicago Cubs. There will be plenty of food, fun, and a Pirates autograph session in the PNC Park Conference Room! Become a part of the 2019 65 Roses Club today by signing up as a 65 Roses Baseball Club Fan or Sponsor!

Help support Cystic Fibrosis Foundation today!

Want to connect with other teens who have CF? The CF Foundation is starting monthly online groups for people with CF, ag...
06/17/2019
Teen Connections Signup - Formstack

Want to connect with other teens who have CF? The CF Foundation is starting monthly online groups for people with CF, age 13-18, to meet others your age, share stories, and connect about what’s important to you. There will be separate groups for middle school and high school ages.
Sign up below in order to receive information about these online groups and other future connection opportunities. **Parental consent will be required for participants

The Cystic Fibrosis Foundation is creating opportunities for teenagers between the ages of 13 and 18 (Teens) with cystic fibrosis (CF) to connect virtually with other teens who have CF.

Are you artsy? Here is your chance to compete in a swag design contest!
06/12/2019

Are you artsy? Here is your chance to compete in a swag design contest!

Calling all artists living with cystic fibrosis! 👨‍🎨 👩‍🎨

What does the phrase, "making every breath count" mean to you? Now is your chance to express yourself artistically through our BreatheCon swag design contest. Submit your original design using this prompt for a chance to have it printed on this year's BreatheCon tote bags.

Enter here: https://on.cff.org/BreatheConSwag

06/05/2019
Cystic Fibrosis Foundation

It’s 65 Roses Day! 🌹🌹🌹

Since 1965, the term “65 Roses” has been used by children of all ages to describe cystic fibrosis. But, making the disease easier to say doesn’t make CF any easier to live with.

Today, on 65 Roses Day (6/5), you can help change that by joining the 65 Roses Club! Your monthly gift will help advance research, care, and advocacy for everyone living with CF. Join today.

https://on.cff.org/65RosesClub

Cystic Fibrosis Foundation
06/05/2019

Cystic Fibrosis Foundation

Wondering how to prepare your child with CF for the future? Wishing you could talk to another sibling of a person with CF? Thinking about growing your family?

On Sunday, June 9, join us for CF FamilyCon—a free online event for adults living with CF, and their loved ones—as we explore these topics and more through panels, group chats, and fun activities.

Register today ➡️ https://on.cff.org/FamilyCon

CF FamilyCon is a virtual event for members of the CF community to share the experiences of living with CF and loving th...
05/23/2019
CF FamilyCon

CF FamilyCon is a virtual event for members of the CF community to share the experiences of living with CF and loving the people who are in it with you.

People with CF and their loved ones are invited to this free virtual event created by and for the CF community, which will take place on Sunday, June 9, 2019.

I'm going to CF FamilyCon on June 9! CF FamilyCon is a virtual event for members of the CF community to share the experiences of living with CF and loving the people who are in it with you. Find out more and register to join me by visiting www.cff.org/familycon

05/21/2019
Cystic Fibrosis Foundation

Cystic Fibrosis Foundation

“I will tell you the future is incredibly bright, and I think the best is yet to come. And that’s why I think it’s the right time for me to pass the baton.”

Today, we announced that President and CEO Preston W. Campbell, MD plans to retire at the end of 2019. Here is a special message from Preston to the CF community.

Thank you to all of our teams that came out today!
05/04/2019

Thank you to all of our teams that came out today!

WVU Mountain State Cystic Fibrosis Center
05/04/2019

WVU Mountain State Cystic Fibrosis Center

We hope everyone enjoyed their time at the Great Strides Walk & Education Day! #AddingTomorrows #UntilItsDone
05/04/2019

We hope everyone enjoyed their time at the Great Strides Walk & Education Day! #AddingTomorrows #UntilItsDone

05/04/2019
Our vendors are all set up and ready for the walk!
05/04/2019

Our vendors are all set up and ready for the walk!

Registration begins at 11:00 am!
05/04/2019

Registration begins at 11:00 am!

Be sure to register at the check in desk for Education Day on Saturday! You will be entered to win one of many awesome d...
05/03/2019

Be sure to register at the check in desk for Education Day on Saturday! You will be entered to win one of many awesome door prizes! Special Thanks to Mountaineer Home Medical in Morgantown for donating some really great items!

Door Prizes:
•WVU coffee tumbler
•Great Strides half-zip
•Philips Innospire Go (portable nebulizer)
•2 Philips Home Nebulizer systems with 1 neb kit each (supplied by Mountaineer Home Medical)

Address

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

Telephone

(304) 293-1201

Website

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