We are the Michigan State University Cystic Fibrosis Center, the largest clinical CF care center in central Michigan. Since 1990, we have delivered state-of-the-art holistic clinical care to pediatric and adult CF patients, and providing comprehensive education to families and caregivers. We are a core cystic fibrosis center, fully accredited by the Cystic Fibrosis Foundation, and our program consistently ranks as one of the top-performing CF centers in the country*.
*Based on nutritional (BMI) data in our children and adults.
As many of you know, I have taken over the role of CF center director from Dr. Hurwitz. Under Dr. Hurwitz, we have seen significant growth and improvements to the center and my goal is to continue this trend. As part of this, I thought it might be nice to update the CF center patients and families on what we have going on at the center. I drew some inspiration from the State of the Union Address and thought I would provide an update via the website. If this is something the CF center community finds helpful then perhaps I will make this an annual tradition.
First, and probably most importantly, Dr. Hurwitz is back! Dr. Hurwitz will be returning to the CF clinic in March. Dr. Hurwitz and I will be alternating clinics for the most part with each of us holding one pediatric CF clinic per month. Kim will continue to be present at all clinics. On extremely busy clinics, we may all be present if necessary. Jaime will know which clinics are which if anyone has a specific preference so do not hesitate to ask!
The center completed the FUN LLC quality improvement project in 2018. This project has focused on improving care in several different ways. First, we worked hard to improve clinic flow and shorten the time our patients and families spend in the clinic for visits. As you know, the multidisciplinary CF clinic model is the cornerstone of CF care and has numerous important benefits in the care of those with CF. However, as with anything, there is a cost associated with this and the most notable cost of this long clinic visits. The efforts the team has made have made a significant decrease in the time spent in clinic, even if the visits still feel long. I would like to reaffirm that we value your time and are constantly working to be more efficient while still delivering excellent care. Please give us feedback if you think of anything else we might be able to do to improve your experience. Secondly, we have started using SMART reports from the CF Foundation to help give you a better idea of the long term status of your health. Often, we get very focused on the lung function, BMI, or clinical symptoms of any one visit and it is important to keep an eye on the long term trends in your health which may give us important clues into the success of our current treatment regimen. These reports give you a visual representation of some of the long term trends in lung function and nutrition that many people find helpful.
Our center is making an increased effort to get more involved in CF research. Samantha Cassisi, the center genetic counselor, has taken on the additional role of the research coordinator for the center. This should allow us to have more clinical trials for CF therapies available through our center. We are also collaborating with a new CF researcher on MSU’s campus with the hope of getting a better understanding of the different bacteria in the lungs of people with CF. Dr. Robert Quinn studies how the bacterial communities in the CF lung cause disease in patients. Some of you may be asked to participate in this study, which will start with simply collecting frequent sputum samples at home to monitor how the bacteria in your lungs changes with time. This will help us understand how the different bacteria, some of which we can not grow on our regular cultures, contribute to exacerbations or lung damage. Dr. Quinn’s work is very interesting and I am excited we have the opportunity to help in learning more about the disease.
I want to conclude by saying that the state of our CF center is strong. The center continues to grow in size, not only in number of patients, but in number of team members. We are due for reaccreditation this year and feel confident with will receive full accreditation yet again. We will be adding an additional CF physician in the spring to the adult program to work with Dr. Ely and replace Dr. Burnett who retired. We are working hard to ensure high quality care that matches any center big or small nationally while providing the personalized touch only the small centers can truly provide. We continue to welcome feedback and encourage you to approach us with any ideas big and small. Thank you for the privilege of allowing us to care for you and your family members.
Ryan Thomas, MD
Director, MSU Cystic Fibrosis Center
The MSU Cystic Fibrosis Clinic staff would like to invite your family to attend our 13th annual CF Family Education Day on Saturday 11/17/18. This day is set aside for the families and caregivers of our CF Patients. The event will be held in the Heritage Room of the Henry Center located in the University Club at 3435 Forest Road Lansing, MI 48910. A lunch buffet will be served. Please join us from 11:30 am - 2:30 pm for this informative gathering.
Chris Kvam will join us as our guest speaker and share his CF journey with us. He is an Assistant District Attorney, CF advocate, father and husband. Chris cares deeply about finding better ways to help those with CF cope with the many challenges that accompany living with progressive chronic illness. Multiple vendors will be present and available to answer questions regarding products and services they offer.
To maintain clinical separation of friends with CF and to adhere to the CF Foundation guidelines, we ask that only family members and/or caregivers attend.
Please RSVP via phone 517-884-8614 or email firstname.lastname@example.org . Feel free to contact us with any questions or bring them with you to Family Day. We look forward to spending time with you.
Registration is now open for the 2018 Lansing Great Strides Cystic Fibrosis fundraiser.
Check-in: 10:00 AM
Walk: 11:00 AM
Event Location: Hawk Island Park,
We held our annual CF Family Day last week, bringing patients, families, and vendors together for lunch and inspirational talk from CF awareness activist Jessica Muir and her husband Scott. As a personal thanks to Jessica, we donated $1,500 to the Donate Life Family Fun Run.
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