The Foundation for Sarcoidosis Research (FSR) is proud to share that they are utilizing the Chan Zuckerberg Initiative (CZI) Rare as One Cycle 2 grant to fund FSR’s Community Engagement Commission (FSR-CEC). Sarcoidosis disproportionately affects African Americans and impacts this population more severely and chronically due to barriers associated with diagnosis, treatment, and limited enrollment in clinical trials. The commission is focused on creating a public health intervention to raise awareness and improve the diagnostic and referral pathways for the Black and African American population living with sarcoidosis in the United States.
The FSR-CEC is a group of diverse stakeholders who share a deep commitment to raising awareness for sarcoidosis among community groups, healthcare providers and individuals. The commission will develop and pilot test frameworks that promote strategies to strengthen clinic-community relationships and improve both community level and clinician level awareness for this complicated and unique rare disease. By strengthening relationships, sharing information that will lead to faster diagnosis, and improving access to excellent healthcare, the commission hopes to improve health outcomes for Black and African Americans with sarcoidosis.
The 19-member commission includes sarcoidosis patients, community health groups, religious leaders, clinicians, public health specialists and researchers, and future medical school students. Through monthly meetings relevant topics are discussed, the commission is working collaboratively to develop practical directives that will be implemented and tested by pilot teams in 2023-4.
Garrie Farrow
FSR Patient Advocate
Garrie is an FSR Global Sarcoidosis Alliance Clinic Community Leader. She has been managing pulmonary sarcoidosis, sarcoidosis arthropathy, and skin sarcoidosis (to name a few). She sums up her experience like this, "I am living with Sarcoidosis. We are frenemies. I don’t like it and it doesn’t like me, but we share the same body. I’m actively trying to find a way to evict this disease squatter." Garrie’s professional experience includes over 17 years as an Applications Trainer for a nonprofit HMO that has its own medical staff. Garrie trains staff (new and current) on how to use the Electronic Health System along with applications that are developed in the company.
Mary Oldham
FSR Patient Advocate
Mary received a Bachelor of Science in Horticulture with a minor in Biochemistry from Cal Poly San Luis Obispo, CA. While at Cal Poly she became a founding charter member of the Lambda Nu chapter of Alpha Kappa Alpha Sorority. After graduating, Mary worked in the horticulture industry for 30 years before becoming the director of marketing for a large restaurant and brewery, retiring in 2019 to pursue volunteer work. Currently, Mary serves on the board of directors for two nonprofits; The HEAL Project and Mavericks Community Foundation.
Mary was diagnosed with bone sarcoidosis with lung involvement in 2017, and is grateful and honored to be included in the Women of Color Patient Committee with FSR, and looks forward to spreading the word about her sarcoid experience and advocating for African American women and the greater community to learn about this rare disease.
Daniel Stoltzfus, MD
FSR Patient Advocate
Daniel is currently a Professor of Anesthesiology at Georgetown University School of Medicine in Washington DC. After finishing training in both Anesthesiology and Intensive Care Medicine at Walter Reed Army Medical Center, he taught at the Uniformed Services University of Health Sciences in Bethesda Maryland for four years. Daniel then taught at the University of Florida College of Medicine for three years, and held leadership positions at the Veterans Administration Hospital. Following this, he spent more than twenty years in private practice, also holding many leadership positions. Dr Stoltzfus returned to academic medicine in 2015 at MedStar Washington Hospital Center, where he organized and served as the first Chairperson of the Department of Critical Care Medicine. Daniel was diagnosed with systemic sarcoidosis, and sarcoid cardiomyopathy in 2018, necessitating his leaving clinical medicine practice and a demanding leadership position. Since then, he completed a program in Leadership Coaching at Georgetown University, and provides executive, leadership, transitions, and wellness coaching and education focusing on health care professionals. He continues to hold an academic appointment at Georgetown College of Medicine, where he will be serving as in a leadership position for faculty development.
Pastor Richard Hughes
Ebenezer Baptist Church
Rev. Richard Hughes serves as the Executive Pastor at Ebenezer Baptist Church in Charlotte, NC. A native of Lexington, KY, Rev. Hughes is a graduate of Simmons College of KY, along with Wake Forest University School of Divinity, and is currently pursuing the Doctor of Ministry degree at Payne Theological Seminary. Rev. Hughes is a member of various community organizations, and has worked in the nonprofit sector specializing in economic and community development. Most importantly, Rev. Hughes is married to the former Dr. Otteria T. Miller, DMD and is the proud father of their son Braxton.