The Story of The Greater Kansas City Pulmonary Fibrosis Support Group—Dale Brommerich

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The very first Support Group meeting of patients diagnosed with Pulmonary Fibrosis in the Kansas City area met in March, 2013.  The idea was the brain-child of Pam (Dawnie) Ellison, a Certified Respiratory Therapist, BS., who works in the Pulmonary Rehabilitation Dept. at St. Joseph Medical Center in Kansas City Missouri.  That first meeting was attended by 4 people along with Dawnie and another co-worker, Eugenia Moley.  

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To encourage all P.F. patients in the area to participate, they called the informal group “The Greater Kansas City Pulmonary Fibrosis Support Group”.  For the last 8 ½ years, the group has met every month, without fail, via various methods.  Typically, the group meets the second Tuesday of every month from 4:30 to 6:00 PM at St Joseph Medical Center, 1000 Carondelet Drive, in Kansas City MO. 

For several years, before the Covid pandemic, the group averaged about 25 people at every meeting.  After Covid hit in March 2020, Dawnie communicated with patients and caregivers frequently via e-mail until meetings were converted to Zoom meetings in May of 2020.  Even between Zoom meetings, Dawnie would send out encouraging e-mails, knowing that patients were in near total isolation.  Currently, the group averages 12 – 15 participants per Zoom meeting.

Meeting formats are mixed to meet everyone’s needs.  Sometimes there are open discussions to share knowledge and experiences as patients go through various stages of the disease.  Participants determined that our mission should be to learn and share information and to encourage one another.  At some meetings, we schedule guest speakers to share information.  The subjects vary greatly and include topics like: Exercise for P.F. patients; Healthy eating; Oxygen usage; What are Pulmonary Function Tests; Travel issues for P.F. patients; Preparing for emergencies; Transplant options; and Advance Directives and Trusts.  Sometimes we get patients actively involved like:  Making healthy smoothies; Chair Pilates; and How to Meditate.

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Occasionally, we host a special event, typically in September, which is P.F. Awareness Month.  Our first event was in Sept of 2017 when we co-hosted an Educational Event with Dr. Mark Hamblin and members of his team from The Kansas University Medical Center.  Their Pulmonary Fibrosis program is recognized as a National Care Center Network, where people with PF can find experienced medical professionals who understand their rare disease and support services to improve the quality of their lives.  This event was a great success and was repeated in 2018.  Typically, over 50 patients and family members participate along with several healthcare workers from other area Medical Centers.  As a result, Dr. Hamblin founded a local non-profit foundation called “The Kansas City Foundation for Pulmonary Fibrosis” in August of 2018.  Dawnie and some of the P.F. Support Group patients serve on the Board of Directors.  This relationship has developed into a close partnership with the two organizations. 

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The Greater Kansas City P.F. Support Group is one of the more active support groups in the country and as a consequence, serves as a source for others.  The National Pulmonary Fibrosis Foundation in Chicago has both local medical professionals and patients serving on National Committees.  Pharmaceutical Companies and Durable Medical Device Equipment Companies solicit local patients to participate in focus groups to hear the “Voice of the Patient” when developing new approaches to delivering drugs, advertising, and improving medical devices.