News and Events

The Cystic Fibrosis foundation is conducting a survey to better understand the community’s perspective on genetic-based therapies consisting of mRNA therapy, gene-editing, and gene therapy. As research in this area is increasing it is important that we hear from the community. This survey will assess current knowledge of genetic based therapies as well as willingness to participate in genetic-based therapy clinical trials.

Results from this survey will be used to better understand the community’s perspective and inform future genetic-based therapy research, clinical trials, and communications.

The CF Foundation is interested in hearing from all Adults with CF and their families; however, we are particularly interested in hearing from those with nonsense and rare mutations.

If you would like to participate in this anonymous, 6-minute survey, please click here by Tuesday, February 23rd, at 11:59 p.m., ET. Thank you for your time and consideration.

If you have any questions, please contact jhudson@cff.org .

When: Feb 27, 2021 11:00 AM Eastern Time (US and Canada)

Please click the link below to join the webinar:
https://msuhipaa.zoom.us/j/97050701423?pwd=Z1RWaVoxb3JTbC9ueXBSNGd4VHpmZz09
Passcode: 850515

Or Telephone:
Dial(for higher quality, dial a number based on your current location):
US: +1 312 626 6799 or +1 646 558 8656 or +1 301 715 8592 or +1 346 248 7799 or +1 669 900 9128 or +1 253 215 8782
Webinar ID: 970 5070 1423

School:

Most of our local school districts are returning for the new school year. Many, but not all, have started with online education. It is hard to make any specific recommendations about how to handle the school year without taking a full consideration all the different health and family dynamics for any one person with cystic fibrosis. We do know from very limited data that people with cystic fibrosis have a higher risk of hospitalization secondary to COVID-19. There is increasing evidence of children spreading the virus in communities where children have returned to school have led to an uptick in pediatric cases. If you have questions or concerns about how returning to school might affect the health of you, a family member or would simply like to discuss best ways to keep you and your family safe please reach out to the center for an appointment either in person or via telehealth. 

Newborn Screening Website:

One of the things that came up at our first patient and family advisory board meeting was the need for more information on our website about newborn screening for CF.  In response to this I have made a new page that has some information about newborn screening and CF in general.  The link is below.  This is a wonderful example of how feedback from the people with CF and their families can help us make a better experience for those who come to our center.  If you are interested in joining our patient and family advisory board, please let Jaime know. 

https://cysticfibrosis.msu.edu/index.php/newborn-screening

Podcast:

As some of you may know, I record podcasts for the American Thoracic Society.  I recently recorded a podcast about CF exacerbations with an overview of some of the data and best practices.  I will include the link below.  Some of you may be interested in listening so I thought I would post it here.

https://www.thoracic.org/about/ats-podcasts/breathe-easy-pediatrics-presents-tidal-volume-episode-2-cystic-fibrosis-exacerbations.php

CF Fighters:

As many of you know, CF Fighters is a non-profit organization composed of volunteers dedicated to raising awareness and helping Michigan CF patients and families who need our assistance.  They have provided, and continue to provide, wonderful resources and support for both out CF center and all the patients and families who we care for.  If anyone is interested in giving to a truly wonderful causes the link is below.  They also have fundraisers and raffles from time to time so check back frequently at their site, so you don’t miss out on an opportunity to win some really cool stuff. 

https://www.cffighters.org/donate.html

Ryan Thomas, MD

Assistant Professor of Pediatrics 

Director, MSU Cystic Fibrosis Center

Department of Pediatrics and Human Development

Michigan State University College of Human Medicine

With the successful reopening of our PFT lab we are beginning to offer in person visits.  The adult clinics and my CF clinic will be in person starting in July.  Dr. Hurwitz will still be offering Telehealth clinics.  This way patients and families can seek care in whatever way they feel is safest and best.  Call the clinic or Jaime and arrange an appointment if you are interested.  We may need to close to in person visits again depending on how the COVID-19 situation evolves.  

In other news, adult and adolescents who receive care at our center may be eligible for a free home spirometer (pulmonary function test equipment).  Please let us know if you are interested.  

Ryan Thomas, MD

Assistant Professor of Pediatrics 

Director, MSU Cystic Fibrosis Center

Department of Pediatrics and Human Development

Michigan State University College of Human Medicine