Meet the FSR Women of Color Patient Advisory Committee
The Women of Color Patient Advisory Committee is composed of 15 African American women, both patients and care partners, from all around the United States.
These women will serve as the patient voice of the campaign, using their lived experiences and patient advocacy training to raise awareness among African American women and providers in communities across the US.
Brenda is from Evanston, IL. She was diagnosed with pulmonary sarcoidosis in April, 1989. She enjoys volunteering with FSR and serves on the Patient Advisory Council, and as a Patient Ambassador, Patient Advocate and Patient Navigator. She has established and facilitated multiple sarcoidosis support groups since 1991. She has a bachelor’s degree in Liberal Arts with a concentration in Self Help groups, and a master's degree in Human Services/Counseling from National-Louis University.
Brenda says, “Through the years that I have dealt with this disease, I have come from deep despair to considering sarcoidosis as a gift of enlightenment to education the public.”.
C. Ann Scott is a native from Detroit residing in Gainesville, FL. She has devoted her entire career to education and volunteer work. She retired in 2015 after a 42-year career in education. She has three children and four grandchildren. While Mrs. Scott was officially diagnosed with sarcoidosis in 2016, she believes that the disease was present in her 30’s. Mrs. Scott credits her team of doctors with early detection and effective treatment to help her keep her disease under control.
Mrs. Scott is an active member of the community and serves on several boards. She is involved with the Girls Scouts of Gateway Council, Martin Luther King Commission of Florida, The Gainesville Chapter of The Links, Inc. and the local Alpha Kappa Alpha Sorority Graduate Chapter (Mu Upsilon Omega).
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.
Cheryl was diagnosed with pulmonary sarcoidosis in 2001. September 2021 will mark 3-years since Cheryl's disability retirement from the NYC Department of Education. She holds a degree in business administration, loves doing makeup, and volunteers at her church in Valley Stream, NY.
Cheryl has been an FSR Patient Advocate for three years. She currently serves as an FSR Patient Navigator and on the FSR Speakers Bureau. Cheryl serves as the treasurer of the organization Stronger Than Sarcoidosis (STS), which she co-founded with three other sarcoidosis patients.
Cheryl is also a mentor for interstitial lung disease at Snow Companies /Boehringer Ingelheim and has been featured in a documentary called Beyond Breathless on A&E.
Erica Courtenay-Mann was diagnosed with sarcoidosis in 2011 after it attacked her larynx and deactivated one of her vocal cords. It was later detected in her lungs, resulting in pulmonary sarcoidosis. After a bout of remission due to the various treatment and lifestyle changes, Erica came out of remission in 2017 and now has oral / perioral sarcoidosis.
A three card-Monty winner with sarcoidosis does not stop her from being a FSR advocate, talking with others about living with a chronic illness, and enjoying all that life has to offer. Erica holds a Bachelor of Science degree in Accounting from the University of Illinois at Chicago, but her true passion is helping others.
Garrie Farrow is an FSR Patient Advisory Committee Member. She has been managing pulmonary sarcoidosis for 13 years and sarcoidosis arthropathy and skin sarcoidosis for 5 years. Describing her experiences, she says, "I am living with sarcoidosis. We are frenemies. Exposing my geek side here, I call my immune system, Venom. As long as Venom has external enemies to fight, it leaves me alone and protects me.”
Garrie’s professional experience includes 16 years as an Applications Trainer for a nonprofit HMO. Garrie trains staff on how to use the Electronic Health System, SharePoint, and other applications developed within the company.
Gloria McDaniel is from Chicago, IL with one son, Jeremiah. Gloria works in social service while majoring in Urban Community Studies/Public Administration. Helping others has always been her inspiration and passion. In her career, she has helped hundreds of seniors and individuals with basic computer training and community resources.
Gloria was diagnosed with pulmonary sarcoidosis December 2020. From March 2020 to December, Gloria experienced an array of symptoms along with brain and CT scans, hearing loss, tinnitus and a lung cancer scare. Today, she is doing fine and would like to advocate and share her story to provide a better understanding of the disease. Gloria’s motto: “I have sarcoidosis, sarcoidosis does not have me”.
Jessica Propps is the family member of a patient with pulmonary sarcoidosis. The toll she has seen it take on her family motivated her to advocate for others with the disease.
Jessica holds a Bachelor of Science degree in Biology from Howard University. Jessica is married and a mother to an active toddler. Jessica lives in Dallas, Texas where she enjoys running, trying new restaurants, and traveling.
Jonette “Jo” Harper was born, raised and resides in Charlotte, NC. She has lived with sarcoidosis since 1992. She holds her BA in English and Communication from UNC-Charlotte and a Masters of Human Resource Development, with a training and development concentration from Clemson University. She is an author, activist and an Elder in her church (First United Presbyterian Church of Charlotte, NC) and a proud member of Alpha Kappa Alpha Sorority, Inc. She is blessed to be the mother of two ladies, Sydney and Jocelyn, and to be the co-founder/Vice President of Sarcoidosis of North Carolina Support Group located in Charlotte.
Kathryn is an Army Veteran, where she served as a medic and had an opportunity to meet many people and travel many places. After separating from the Army, in December 2010, Kathryn was diagnosed with sarcoidosis. Her skin, eyes, and lungs were affected. After her diagnosis, every aspect of Kathryn’s life changed, prompting her to become her own advocate.
Kathryn is interested in hospice, respite and bereavement care. Kathryn hopes to bring visibility and awareness about veterans with sarcoidosis. She believes that connecting military service to sarcoidosis, will be key in disease prevention.
Marsha Henderson resides in Washington, DC. She was diagnosed with pulmonary sarcoidosis in 1995 while working as an Emergency Medical Technician with the D.C Fire Emergency Services. Since her diagnosis, she has been faced with the incredible challenges that interfered with her life and the lives of her family. She had to advocate for her own well-being because no one really understood.
Marsha connected with FSR in 2012. She’s the CEO and Founder of the Exhale 4 Sarcoidosis foundation DMV. She enjoys hosting community support groups, awareness walks, spending valued time with her family, and journaling. She published a book about her journey of living with Sarcoidosis and Stage III Colon Cancer entitled, “Breathe Air 4 Me.”
Mary Oldham 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. She looks forward to advocating for African American women and the greater community to learn about this rare disease.
Ora Riley is a former broadcast media professional from Southern California. She has spent the last 13 years as a resident on the east coast where she has been recognized for her community outreach work involving youth and disadvantaged groups.
A devoted wife and dedicated mommy, the former educator is charting new territory as a homeschooler to her son while managing life with ocular and pulmonary sarcoidosis, both diagnosed in 2012.
As a member of FSR's first Women of Color Committee, Ora is eager to share her own story in an effort to encourage other women who are also living with sarcoidosis.
An 18-year neurosarcoidosis survivor, Jessica Reid is also a registered nurse and family nurse practitioner graduate. Advocating on her own behalf to her healthcare team is second nature. She finds the opportunity to teach others to do the same very exciting. Just as she refused to allow neurosarcoidosis to stop her from obtaining her bachelor and master of science in nursing degrees, Jessica aspires to persevere and achieve her Doctor of Nursing Practice (DNP) within the next 5 years.
Jessica is from North Carolina and currently resides in the Triangle Area with her husband and two children.
Rhonda Underhill is a neurosarcoidosis survivor and FSR Patient Advocate. In May 2013, Rhonda was diagnosed with both neurosarcoidosis and hydrocephalus, which left her living in a debilitating state, no longer able to walk or sit up on her own. She was eventually seen by a world-renowned neurosurgeon who presented her options that would allow her to resume a normal life.
Rhonda's will to live and increase awareness by advocating on behalf of the sarcoidosis community is her number one priority. According to Rhonda, “This illness is certainly life changing, but it can be overcome with much prayer, support/love, and the will to live!”