KCFPF

Kansas City Pulmonary Fibrosis Support Group

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There is one PF support group in KC.  This group encourage people with PF and their care partners to discuss and ask questions on Pulmonary Fibrosis.  There are guest speakers to present various topics such as Supplemental Oxygen, PF treatments, Pulmonary Rehab, lung transplants, etc. and open meetings for the members to discuss topics of their choice. These interactions are very important to the person with PF and care partners. The group virtually meets the second Wednesday of every month from 2:00 to 4:00 PM via Zoom. Once the Covid Pandemic is over, the Support Group will return to their regular face-to-face meeting schedule which is the second Tuesday of each month from 4:30 to 6:00 PM at St. Joseph Medical Center.

You can register for the meetings or ask a question by filling out the form below.​

Contact Greater KC PF Support Group

For more information fill out and submit form

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

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.  

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.

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. 

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.

Support Group Member's Stories about Pulmonary Fibrosis

"My Diagnosis of IPF (Idiopathic Pulmonary
Fibrosis)" by Nick Sloop

 

Click here! to read his story

"Running a Marathon for My Dad"
by Nicholas Sloop
 
Click here! to read her story

"My Attitude Is One of Gratitude" By Gail Hicks

 

Click here! to read her story

"Bert’s IPF Journey"

by Bert Maidment

 

Click here! to read his story

"Lung Transplant Journey"

by Teena Kirkendoll

 

Click here! to read her story

"My Transplant Story"

By Barbara Grubb

 

Click here! to read her story

"Embracing the Gift I’ve Been Given"
by Mary Spilman
 
Click here! to read her story

"We’re Walking Side by Side Through An Unknown Journey" by Rhonda Hitchcock

 

Click here! to read her story

"Being a IPF Care Partner"
By Dana Olson

 

Click here! to read her story