July 2024 Newsletter

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Annual Report 2024

The CCN Annual Report is live! The link was emailed to Center Directors, Associate Directors, and Lead Coordinators on July 9. Please have the report completed by Friday, August 16, and email Aubrey Trecek with any questions.

CCN member feature of the month:

Ochsner LSU Health Sciences Shreveport

Center Feature Author: Clinical Associate Director, Afsana Asharaf, MD

Ochsner LSU Health Sciences Shreveport is a tertiary care academic hospital located in Northwest Louisiana with a large catchment area in the Arkansas-Louisiana-Texas region. As a CCN Clinical Associate member, we are able to take care of a large number of patients suffering from a wide variety of complex pulmonary pathologies including interstitial lung diseases (ILDs) and pulmonary fibrosis (PF). In addition to having specialty clinics and inpatient services in the Shreveport region, we are also able to extend our services into more

rural areas via satellite clinics and tele-ICUs at Ochsner Monroe and Natchitoches

regional medical center.


Our division includes nine pulmonary physicians, 11 fellows, and one registered nurse in addition to four critical care physicians, six critical care fellows, and five nurse practitioners who care for patients in the intensive care units. Our ILD clinic is located in Shreveport where we have a robust pulmonary function testing lab. It is right next to the hospital where we have a well-equipped bronchoscopy suite with the ability to perform advanced bronchoscopic procedures, including cryobiopsies using Cellvizio and Envisia testing, as well as a cath lab, where we are able to perform our own right heart catheterizations. Thus, we have a seamless collaboration with our interventional pulmonary and pulmonary hypertension colleagues, and we pride ourselves in being able to provide

comprehensive care for a wide variety of complex pulmonary conditions in patients hailing from diverse socioeconomic backgrounds. Oftentimes, we try to coordinate PFTs, 6 minute walk tests, and physician visits on the same day to make our clinic visits as efficient as possible. We are a clinical trial site for at least one IPF trial and continue to be assessed as a center for future trials. When necessary, we refer our patients to the lung transplant centers at Ochsner LSU New Orleans, Baylor Scott & White Dallas, or University of Texas Dallas, which are all within a 3-4 hour driving radius.



Our monthly multidisciplinary ILD meetings are well attended and help us navigate complex diagnostic decisions and therapeutic plans through discussion with our colleagues in radiology, pathology and rheumatology. We usually discuss four to five complex patients in the format of an educational MDD so as to further enhance the ILD education among our pulmonary fellows. Our goal as a Clinical Associate Member of the CCN is to continue to grow our ILD program, expand our outreach, improve our knowledge, and ensure the best quality, most comprehensive care to the complex patients in our region, all while training the next generation of pulmonary physicians.



CCN Journal Club

The next CCN Journal Club will take place on Thursday, August 29 at 12 p.m. CT. Dr. Chad Newton of UT Southwestern will be leading the discussion about "Telomere length and immunosuppression in non-idiopathic pulmonary fibrosis interstitial lung disease."

Join the Zoom here and please email Aubrey Trecek with any questions.

Support the PFF by hosting a community walk event!

Hosting a community walk event allows you the opportunity to support the PFF by fundraising and building awareness in your local community!


When you host a walk event, you can help people affected by pulmonary fibrosis get diagnosed sooner, receive the best care available, and gain the assistance they need to manage their disease. The PFF provides tools, templates, and resources you need for success. Community walk leaders have found that hosting their own walk event is a fun and rewarding way to get involved with the PFF!


To view our Community Walk Guide or fill out our Team PFF interest form visit our Community Walk page below.

Learn more about hosting a community walk!

Join us at a PFF Walk in 2024!

Walk with us on September 28 for National Walk Day! Bring the spirit of the PFF Walk to your own community in three easy steps:


1) Register yourself and set up a team. Registration is free!


2) Plan your walk. Do you want to walk in a local park or take in your city's sights? Does your Center have a scenic campus? Once you know the logistical details of your day, add them to your team page.



3) Invite others to join you! Share your team page so your colleagues, patients, family members, and friends can register. Remember: Each registered participant who raises $100 or more will receive the PFF Walk 2024 t-shirt in the mail.

All qualified walkers will receive an email with instructions on how to redeem their t-shirts.


Our team is available to help! Contact us at PFFWalk@pulmonaryfibrosis.org or 855.PFFWalk (855.925.5733) for more information or assistance getting started.


Stay tuned for more ideas and resources from the PFF. Thank you for joining us as we walk together toward a cure for pulmonary fibrosis!

Click here to learn more and register!

Upcoming Network events

Mayo Clinic 2024 PFF CCN Patient Education Session


Friday, September 6

12:00pm - 4:00pm CST


Gonda Subway Level Geffen Auditorium


RSVP is required to Shannon Daley, Senior Clinical Research Coordinator Supervisor, at daley.shannon@mayo.edu.

UVA 6th Annual ILD Patient Education Day


Saturday, September 28

8:00am - 3:00pm EST


Attend online or in-person in Charlottesville, VA


Keynote Speaker: Dr. Daniel Kass Registration link coming soon!

Share your oxygen story in support of the SOAR Act!

Many patients are unable to receive the oxygen equipment, supplies, and services that they need to maintain their health. The Pulmonary Fibrosis Foundation (PFF) is currently advocating in favor of the Supplemental Oxygen Access Reform (SOAR) Act, which was introduced in the U.S. Congress in early 2024. The SOAR Act will improve Medicare patients’ ability to access the necessary and appropriate oxygen equipment, supplies, and services. Learn more about the Four Pillars for Supplemental Oxygen Reform that provide the basis of the SOAR Act.



The PFF is asking patients who use oxygen, patients who have used oxygen in the past, as well as their caregivers, family members, and healthcare providers, to share stories of using supplemental oxygen. Stories may be shared on social media, with government officials, or through other channels to demonstrate the benefits that the SOAR Act would have for the community. Since the information is to be used for U.S.-based advocacy purposes, please only complete this form if you are a resident of the U.S.

CLICK HERE to submit your oxygen story

We sincerely thank you, CCN members, for your commitment to supporting and bringing awareness to ILD and PF. Due to your dedication, researchers are discovering how to better diagnose and treat the more than 250,000 Americans living with PF in the hopes of someday finding a cure. Click here to learn more and share information with your network about the PFF Community Registry and how it’s advancing research.

Save the date for the PFF Summit 2025 in

Chicago, IL!

Sponsors

The PFF Care Center Network is funded through the generous support of corporations, foundations, and individuals who have been impacted by PF.

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About PF... Breathe Bulletin Contact Us

About the Pulmonary Fibrosis Foundation 

The mission of the Pulmonary Fibrosis Foundation is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and health care providers. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733).


The Pulmonary Fibrosis Foundation rates among top charities in the U.S. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. The Foundation has met all of the requirements of the National Health Council Standards of Excellence Certification Program®, and has earned the Guidestar Platinum Seal of Transparency. For more information, please visit our website.