ACTe Now! Patient Advisory Committees

Meet the Faces of the Campaign: 

We are thrilled to introduce the two patient committees leading this effort as advisors and advocates for the campaign. 

ACTe Now Patient Advisory Committee

The ACTe Now Patient Advisory Committee is composed of 7 Black men and women living with sarcoidosis. This committee served as lead advisors on the campaign, using their diverse professional backgrounds and experiences with sarcoidosis, to aid in the development of the campaign, materials, and the patient survey.

Myrtle Bell

Myrtle Bell is a business professor with a focus on diversity, equity, and inclusion, particularly marginalized and oppressed groups. She was diagnosed with cardiac and pulmonary sarcoidosis in 2019 after a brief medical investigation of an unusual EKG by an astute cardiologist who asked, “have you ever heard of sarcoid?” Having had a favorite aunt who lived with sarcoidosis for over 30 years, Myrtle was well aware of the disease, yet still found tremendous support through FSR as she began her own sarcoidosis journey.

Myrtle is married with two adult children and one grandchild. In her spare time, Myrtle enjoys tending to her more than 500 houseplants, gardening, and traveling.

Erica Courtenay-Mann*

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 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 has found great joy as a patient advocate through her involvement on the Women of Color Committee, and now the ACTe Now! Patient Committee. She sees her role as a change agent pushing for better health outcomes for those who navigate life with this shape-shifting disease.

You can hear more about Erica’s story in the following Podcast Interviews:

Sarc Fighter: Living with Sarcoidosis and other rare diseases: Episode 55 | Erica Courtenay-Mann Has Sarcoidosis on her Vocal Cords. But she is speaking out! on Apple Podcasts

Talk 53: HERstory in the Making w Erica Courtenay-Mann (buzzsprout.com)

Community Affairs Show: African American Women and Sarcoidosis (praisedc.com)

Sarcoidosis and Advocating for Proper Healthcare with Erica Courtenay Mann - Fitness, Finances and Your Family | Podcast on Spotify

Calvin Harris

Calvin was diagnosed with sarcoidosis in 2014, but despite his disease, strives to live a life in service of others. He is the Chief Executive Officer of the New York State Society of CPAs, the oldest membership organization in the certified public accounting profession. He grew up in Maryland, near Washington, DC, and now lives in Brooklyn, New York.

Calvin writes a twice-monthly column for Sarcoidosis News, called “Run Your Own Race.” The title is inspired by his newfound love of running, something his first pulmonary sarcoidosis doctor said was impossible for him, yet later and current doctors encouraged. He hopes his column reminds other sarcoidosis patients that our journey is our own race to run.

Purvis Hunt

Purvis L. Hunt, Jr. is a retired automotive executive born in Michigan and has lived in Florida since 2005. He was diagnosed initially with pulmonary sarcoidosis in the early 1990’s. After various treatment plans and follow up procedures, it was determined his primary medical issue was cardiovascular sarcoidosis. Five AICD’s (Automatic Implantable Cardiac Defibrillators) later, he is on a heart transplant list.

Following his early retirement in 2005, he continued in his personal efforts to give back to the community. He served as a Guardian ad Litem (child advocate) and wrote and conducted Diversity Training workshops for future Guardians in a five-county area. In addition, he held several positions within his county’s Afro-American Club, including serving as President. Finally, as an active life member of Kappa Alpha Psi fraternity, he helped charter an alumni chapter, which focuses on male youth development and community support.

Mary Oldham*

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 currently serves on both the ACTe Now! and Women of Color Patient Advisory members for the Ignore No More initiative. She looks forward to advocating for African American women and the greater community to learn about this rare disease.

Rhonda Underhill*

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. She currently serves on both the ACTe Now! and Women of Color Patient Advisory members for the Ignore No More initiative.

According to Rhonda, “This illness is certainly life changing, but it can be overcome with much prayer, support, love, and the will to live!”

Kathryn Washington*

Kathryn Washington is a biologist, public health professional and consultant. Her passion is for science and improving the lives of those around her.

Kathryn served in the U.S. Army as a medic. She was diagnosed with sarcoidosis after leaving the military. She has pulmonary, ocular, and cutaneous involvement. Kathryn believes in contributing and being of service to her community as an advocate and by bringing awareness through education, and community engagement. She serves on committees focusing on veteran suicide, opioid addiction, mental health, and well-being in underserved communities.

Kathryn is grateful for the opportunity to serve on the Patient Advisory Committee and looks forward to building lasting relationships with committee members and FSR. She currently serves on both the ACTe Now! and Women of Color Patient Advisory members for the Ignore No More initiative.

*Also serve on the Women of Color Patient Advisory Committee

Women of Color Patient Advisory Committee

The Women of Color Patient Advisory Committee is composed of 15 Black 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 Black and African American women and providers in communities across the US.

Garrie Farrow

Garrie Farrow is an FSR Patient Advisory Committee Member. She has been managing pulmonary sarcoidosis for 15 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. You can hear more about Garrie's story in the Tallahassee Democrat.

Jonette Harper

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, and is currently studying Christian Education at Union Presbyterian Seminary in Charlotte, NC. She is an author, activist, and an Elder in her church (First United Presbyterian Church of Charlotte, NC), a Faith Consultant for “Souls to the Polls”, and a proud life time member of Alpha Kappa Alpha Sorority, Inc. She is blessed to be a mother of two young ladies, a mother-in-law to a wonderful son and new grandmother to a beautiful baby. She is also the Co-Founder and Vice President of Sarcoidosis of North Carolina Support Group located in Charlotte

Brenda Harris

Brenda is from Evanston, IL.  She was diagnosed with pulmonary sarcoidosis in April of 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 educate the public.”

Marsha Henderson

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.”

Gloria McDaniel

Gloria McDaniel is from Chicago, IL and is a mother to one son. 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”.

Chasta Posey

Chasta Posey is a native of Greenville, SC. She is a 17-year THRIVER of sarcoidosis. Having this illness, caused Chasta to reroute her life. She is now a 7-year Patient Advocate for the international Foundation for Sarcoidosis Research. Being a part of this foundation has afforded her several opportunities to become a Patient Advocate, Peer Mentor, Patient Navigator & a member of the inaugural Women of Color Committee.

Chasta has done work with the Pulmonary Hypertension Association & is currently in collaboration with the Susan Pearlstine Center of Excellence on the campus of the Medical University of South Carolina (MUSC).

Chasta loves helping people. She is very passionate about helping other patients find their voice for their cause. Being a charismatic voice for the voiceless, allows her to bring education & awareness to others, but also allows her to help other patients advocate for themselves.

Jessica Propps

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. 

Ora Riley

Ora Riley is a Maryland-based emerging Mompreneur who was diagnosed with ocular and pulmonary sarcoidosis in 2012 on the cusp of a new marriage, motherhood and a rising education career.

After nearly ten years of managing life with sarcoidosis, Ora is dedicated to sharing her story and self-care journey in an effort to inspire others who are also living with this unpredictable, incurable condition.

Jessica Reid

Jessica Reid is a 19-year neurosarcoidosis survivor and Family Nurse

Practitioner. She has an unstoppable spirit and thoroughly enjoys learning something new every day. 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 has volunteered as a Patient Advocate for FSR for four years. She currently serves as a Patient Navigator, member of FSR’s Speakers Bureau and a co-host for FSR’s monthly virtual Sarcoidosis Support Group. In April, Jessica was interviewed and featured in an article for Authority Magazine/Thrive Global. She also participated in FSR’s first exclusive virtual Patient Listening Session with the US Food and Drug Administration (FDA).

Jessica was born and raised in North Carolina and resides in the Triangle area with her husband, daughter, and son. Aside from volunteering with FSR, in her spare time, she enjoys serving in her church, exercising, reading, and spending time with her family and friends.

View the ACTe Now! Clinical Advisory Committee

Categories

Recent Posts