WVU Mountain State Cystic Fibrosis Center

A new school year means new opportunities for germs to spread. Help your child reduce their risk of getting sick at school with these eight tips: https://on.cff.org/4cNcELg

We would like to thank everyone who came out to the great strides walk and to everyone who donated to a great cause!! This year so far we have raised more than $32,000!!

Come out to the Great Strides walk this morning! It’s wet but we have plenty of cover and there’s gonna be tons of free food & entertainment! We’ve surpassed our goal for this year at over $30,000 for the CF Foundation!

Some members of the team together at the 2024 TDN Spring Meeting.

A great opportunity for adults with CF!

Living with cystic fibrosis can be expensive, especially when insurance deductibles reset at the beginning of the year. But you’re not alone. A Compass case manager can provide you with personalized information and resource referrals to help you navigate your financial planning journey step by step. Learn more about what you can do to manage your finances: https://on.cff.org/42ya2NB

BreatheCon 2024 starts tomorrow, but there’s still time to register today!

Designed by and for adults with cystic fibrosis, BreatheCon provides a virtual space for the community to make connections, share experiences, and learn from others who understand life with CF. During this year’s event you will find:

1. Welcome lounges for first-time BreatheCon attendees and affinity groups for Black people with CF, Spanish-speakers, LGBTQIA+, adults 40 and older, individuals living post-transplant, and more.

2. Panels and group discussions on topics including late or delayed diagnosis, managing daily CF care, thriving in the workplace, aging with CF, and more.

3. Social opportunities like the post-event happy hours, where you can make new friends and discuss aspects of life other than CF.

All adults with CF are encouraged to join this unique virtual event, whether you attend one session or the entire two-day conference. Register now: https://on.cff.org/BreatheCon2024

This Grandparents’ Day, we celebrate all the amazing grandparents who offer their unconditional love and support to their grandchildren. Thank you for being there to share stories, pass on your wisdom, and care for your loved ones in the cystic fibrosis community.

There are some BIG changes happening at Project CF Spouse, and we are excited to share them with you!!!

The first big change is we've MOVED....well virtually speaking anyway!!! Take a minute to visit us at our new website (www.projectcfspouse.org) and make sure you subscribe to stay in the loop of all the other big things we are working on!!

Are you or a loved one with cystic fibrosis unable to benefit from a highly effective modulator therapy? We need to hear from you. Your unique perspective and experience can help make an impact on support and research planning for the CF community.

By signing up for Community Voice, you’ll have an opportunity to share your perspective and inform the design of future genetic-based research trials, through interviews, surveys, committees, and more to help make a difference for every person affected by CF. Join Community Voice today: https://on.cff.org/44WIly3

Today is the LAST DAY to order a team t shirt! If we don’t make the minimum print amount, they will not be able to print them! Get your orders in! All proceeds will be donated to the foundation! 💜

Support Mountain State CF Center for Great Strides CF Center team Mountain State CF Center. Campaign ends Tuesday, May 16. Help us meet our fundraising goal of 50 shirts!

🔆Hey Morgantown! Did you know that brushing your teeth with sunglasses on the night before Great Strides leads to blue skies - and dollar signs?! Join in on the fun with our staff and snap a pic and post to your social - one more call for donations! See you all tomorrow- rain or shine we are making strides to make CF stand for Cure Found!

FDA Approves Kalydeco for Infants as Young as 1 Month The U.S. Food and Drug Administration approved Kalydeco® (ivacaftor) for infants as young as 1 month who have at least one copy of 97 mutations that have proven to be responsive to Kalydeco.

The CF team is excited to announce a fundraiser for the Great Strides walk this year! You can help raise money for the CF Foundation by purchasing a t shirt representing the Mountain State CF Center! Whether a patient, family member, caregiver, nurse, physician, RT, you can now represent the CF team! ALL PROCEEDS GO TO THE GREAT STRIDES WALK! 💜

Support Mountain State CF Center for Great Strides CF Center team Mountain State CF Center. Campaign ends Tuesday, May 16. Help us meet our fundraising goal of 50 shirts!

Exciting news!

FDA Approves Trikafta for Children Ages 2 Through 5 Years With Certain CF Mutations With this approval, approximately 2,250 children in the U.S. will be eligible for Trikafta® (elexacaftor/tezacaftor/ivacaftor), including more than 900 who will have access to a CFTR modulator for the first time. The Cystic Fibrosis Foundation believes it is beneficial to start people with cystic f...

ResearchCon is April 26 - 27
Learn and discuss the latest in cystic fibrosis-related science, research, clinical care, and lived experience alongside members of the CF community, researchers, and clinicians.

ResearchCon 2023 Get tickets to ResearchCon 2023, taking place 26/04/2023 to 28/04/2023. Hopin is your source for engaging events and experiences.

We hope to see many of you at the great strides walk on May 13th!!

We want to wish the happiest of birthdays to our favorite respiratory therapist!! We hope you have a great day!! 👏🏻🎊🎉🎁🎂 Brittany Sines

Looking to find support from those who just “get it”? Make new connections and see familiar faces at CF FamilyCon, a free virtual event for people with CF and those who love them (attendees must be age 16 and older) on October 21 and 22.

Register now: http://on.cff.org/CFFamilyCon