Hetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. Her main goal is to raise awareness of and advocacy for lupus patients, like herself, in South Carolina. Hetlena now serves as the Chief Volunteer Officer of the newly transitioned LFA South Carolina Community Partner (LFASCCP). She leads and coordinates the training of support group leaders in the state of South Carolina. Her work with lupus sparked a partnership with the Institute for Partnership to Eliminate Health Disparities (IPEHD) Arnold School of Public Health of the University of South Carolina to spread the word on the development of a South Carolina Lupus Registry. Hetlena’s flagship company, The Lupus Liar, allows her to educate, advocate and raise awareness about lupus as a highly sought after speaker, critically acclaimed author, coach, presenter and trainer. She is well-versed in data management, community awareness strategies, and lupus education presentations.
AVAILABILITY: 21-30 hours/week
Digital Resource Coordinator for four school districts positioned as a consortium for a federal grant funded initiative. Responsible for communication, training, coordination and overseeing 15 digital resource coaches across the consortium.
Patient advocate, speaker, and panel moderator for various lupus awareness initiatives.
As part of 11 members to its patients-only 2016-2017 Team of Advisors who focus on elevating the patient voice. As a Team of Advisors member, I have had the opportunity to share my story, participate in community initiatives, and give real world perspectives to our industry and research partners.
More information at http://news.patientslikeme.com/press-release/patientslikeme-welcomes-next-patient-team-advisors
Peer Approaches to Lupus Self-Management Study (PALS) peer trainer and lupus support group leader. Assisting with Dr. Edith Williams, Principal Investigator, Department of Health Sciences on investigating whether a peer mentoring program can improve the quality of life, self-management, and disease activity in African American women.
“Conducting Effective Lupus Support Groups – Virtually or Face-to-Face,” Featured Speaker, Directors of Health Promotion and Education Lupus Education and Awareness for Patients, Professionals and Providers (DHPE LEAP), Webinar, October, 2016.
“Life with Lupus: How to Coordinate Care,“ Workshop, Big Bend AHEC and Rural Health Network, Florida Lupus Summit: Exploring the National Public Health Agenda for Lupus, Tallahassee, FL, August, 2016.
“Patient-Nurse Communication Regarding Lupus from a Lupus Patient’s Point of View,”, Directors of Health Promotion and Education Lupus Education and Awareness for Patients, Professionals and Providers (DHPE LEAP), National Black Nurses Association 44th Annual Institute and Conference, Memphis, TN, August, 2016.
The Development of a South Carolina Lupus Registry: Poster Presentation, Co-Presenter (Dr. Edith Williams), The Epidemiology Congress of the Americas 2016 Conference, Miami, FL, June, 2016.
“Your Lupus Ethos: Learning to Live with Your Lupus,“ Keynote, Urban Minority Alcoholism and Drug Abuse Outreach Program (UMADOAP), Lupus Education Event, Dayton, Ohio, May, 2016.
“Make Lupus Your Business Not Your Burden,“ Workshop, Urban Minority Alcoholism and Drug Abuse Outreach Program (UMADOAP), Lupus Education Event, Dayton, Ohio, May, 2016.
“The Importance of Early Diagnosis and Patient-Primary Care Provider Communication Regarding Lupus,” Directors of Health Promotion and Education Lupus Education and Awareness for Patients, Professionals and Providers (DHPE LEAP), National Medical Association Region V Conference, Kansas City, MO, April, 2016.
06/15/2017 - 06/29/20175.0
Professional, great on camera and wonderful to work with! Will definitely work together again.
09/18/2017 - 09/18/20175.0
It's always a pleasure working with Hetlena. She did an amazing job recording some video answers to a few research questions. A++