Conversation of Health Disparities with Terry & Michele Wright
The Public Advisory Roundtable (PAR) of the American Thoracic Society (ATS) presented a live webinar in the series “ATS PAR Check-Up: Conversations with Lung Disease Patients” on Tuesday, April 20th from 2pm-3pm CST.
Terry Wright, a cystic fibrosis patient, and his wife Michele shared about their journey to his CF diagnosis, which occurred later in his life. They discussed some of their personal experiences with disparities and deficiencies in the health care system while trying to obtain care for Terry. Of interest in their journey are the many institutional systemic challenges they observed over many years on their way to a diagnosis, and their life since diagnosis.
Other discussants on the webinar included prominent ATS member Linda Chlan, PhD, RN, the first associate dean for nursing research at the Mayo Clinic College of Medicine and Science; Michele Manion, co-founder and executive director of the PCD (Primary Ciliary Dyskinesia) Foundation; and Siri Vaeth, executive director of the Cystic Fibrosis Research Institute (CFRI). Click here to view the webinar: https://www.thoracic.org/patients/ats-par-check-up/health-disparities.php
Thank you, Bridget. It was an honor for me to part of this ATS PAR check-up. I learned so much from Terry and Michele.
Linda
Take good care everyone and stay well
Mr. & Mrs. Wright, it was an absolute pleasure to meet you and to hear your story. I am in awe of how optimistic and hopeful–and willing to help others–you remain despite the challenges you’ve faced and am grateful to have been able to participate in this event.
There are some families in our group who I think would be especially inspired by what you’ve done with NOAACF. In particular, one mom from Tennessee comes to mind. I’ve known her for years, she is already an amazing advocate, basically serving as the unofficial ‘PCD ambassador’ for our clinical site at Vanderbilt. If she would like to connect, should I have her reach out to you through your NOAACF website?
Thank you so much again,
Michele Manion
