Date/Time
Date(s) - 01/25/2022
6:30 pm CST - 7:45 pm CST
Categories
Join us Tuesday, January 25, 2022 from 6:30 pm – 7:45 pm CT.
Did you know only 20% of health outcomes are determined by the care and services you receive within the walls of your hospital or provider’s office?
That’s right…so what accounts for the remaining 80%? What factors actually drive your health outcomes? Patients across the country, of all demographics, experience barriers, but when you have a chronic disease, it’s even more critical when these barriers prevent you from receiving the best care and optimal health outcomes. Join us for an informative webinar as we dive into “the 80%” and discuss universal barriers experienced by chronic disease patients. By identifying and understanding the universal barriers that exist for all patients, we can work together to address them and help improve care for our sarcoidosis community.
Tune in to hear from Dr. Ennis James of the Medical University of South Carolina and sarcoidosis patient advocates Chasta Posey and Jim Kuhn, for an intimate discussion about healthcare in America and what we can all do to improve care for sarcoidosis patients nationwide. This webinar will be moderated by award-winning news anchor and sarcoidosis warrior and advocate, John Carlin. John is the host of the SarcFighter Podcast, a podcast specifically for individuals whose lives are impacted by sarcoidosis and other rare or chronic illnesses.
Speakers:
Chasta Posey: Being a 16-year survivor of sarcoidosis, Chasta has served in several roles, during her tenure at FSR. Those roles include Patient Ambassador, Patient Advocate, Patient Navigator and Peer Mentor. She has also served as the Upstate Representative for the Sarcoidosis Foundation of South Carolina! Chasta really enjoys helping people.
Jim Kuhn: Jim Kuhn is a Rare Disease Warrior/Advocate/Speaker/Mentor. He was diagnosed in 2014 with sarcoidosis that initially started in his lungs/lymph nodes, before quickly spreading to his eyes and skin, and most recently he was also diagnosed with neurosarcoidosis. He also suffers from several other related rare diseases and a complicated medical condition. Jim is passionate about helping other sarcoidosis patients and giving them tips to understand and live with the disease, as well as find knowledgeable healthcare providers. Jim spent 35+ years in global business and medical missions leadership roles, and now looks forward to using that experience to help create, implement and strengthen the Patient Advisory roles within FSR. His specialty is developing highly functioning teams and servant leadership. Jim and his wife of 33 years, Jean, refuse to let his disability ruin their enjoyment of life. Jim enjoys spending short periods of time gardening, and is an accomplished cook that has won multiple awards in national chili cook-offs.
Dr. Ennis James: Dr. Ennis James became interested in sarcoidosis as a pulmonary and critical care fellow at Virginia Commonwealth University and joined the pulmonary faculty at the Medical University of South Carolina in 2015. Dr. James is a member of FSR Scientific Advisory Board and FSR’s Clinical Studies Network and serves as the Program Director for the Susan Pearlstine Sarcoidosis Center of Excellence. He strongly believes in its vision to improve the lives of sarcoidosis patients by providing coordinated, patient-focused multidisciplinary care and cutting-edge sarcoidosis research. He is happy to see sarcoidosis patients with any type of organ involvement.
Moderator:
John Carlin
In January of 2016 I learned that I had neurosarcoidosis following a biopsy on my spinal cord. Since then, I have learned the hard lessons that so many sarc patients come to understand, progressing from prednisone through a menu of other drugs that are only reasonably effective, but whose side effects are terrible and undeniable. In 2019 I applied to be an FSR Advocate and attended my first meeting in Maryland. I enjoyed meeting my fellow advocates and became more determined than ever to become a part of the solution. In the meantime, I had started the wheels rolling on another idea and in January of 2020 launched the Sarc Fighter podcast, to shine a light on the trouble patients face with the disease. I also want to look at possible solutions, by interviewing fundraisers, physicians, and researchers. As a news anchor for WSLS-TV the NBC affiliate in Roanoke, VA, I have emceed dozens of events for local non-profits and serve on numerous boards.
For additional information about the sarcoidosis program, please visit www.musc.edu/sarcoidosis
Sponsored by Mallinckrodt Pharmaceuticals.