March 26, 2024
Los Angeles, CA – Lupus LA, a leading nonprofit organization dedicated to combating lupus through extensive patient programs and services, funding research, and national advocacy, today announces the formation of its inaugural Patient Advocacy Panel members.
Authentic stories are paramount in highlighting lupus’s severity and aiding in discovering its cause and cure. This groundbreaking initiative builds on the power of personal stories to illuminate living with lupus, thereby fostering a deeper understanding.
Lupus LA is committed to transforming patients’ narratives from pain to promise. “Every day, we strive to turn each story of suffering into one of hope, through our comprehensive patient services, medical research support, and impact on national advocacy,” said Susan Bazarsky, Executive Director, Lupus LA. “We launched our now award-winning podcast, Your Story Our Fight™, in 2021, which heavily focused on elevating lupus stories. Our Patient Advocacy Panel will build on this foundation of lupus awareness and help improve patient care and time of diagnosis.”
The Lupus LA Patient Advocacy Panel was conceived by the organization’s new Board Co-Chairs, Stacey Uberstine and Maurissa Tancharoen Whedon. The select group of patient leaders will work closely with Lupus LA to share their unique experiences, insights, and connections to global communities. Patient Advocacy Panel Members are beacons of hope, resilience, and fortitude, bridging multiple generations. This diversity ensures that a multitude of lupus narratives from different life stages are shared and acknowledged. Their contributions are essential in shaping public perception and fostering meaningful advancements in lupus awareness and treatment.
The panel plays a pivotal role in amplifying the needs and successes of the lupus community, offering crucial feedback to enhance patient experiences. Panel members will promote Lupus LA’s events, initiatives, and programs, further extending the organization’s impact.
Vania Dzib is a 29-year-old female living in Los Angeles. An Infant Therapist, Vania has been living with Systemic Lupus since December of 2004. Diagnosed at the age of 10, Vania has remained passionate about spreading awareness of an invisible disease and has joined Lupus LA’s Patient Advocacy Panel to share her experiences.
Diagnosed with Systemic Lupus Erythematosus at 17, Cambria Francesca is a Plus Size Model, Influencer and Lupus Advocate who has recently joined Lupus LA’s Patient Advocacy Panel. Cambria has been Plus Model Magazine’s Model of the Month in their March 2016 issue. That same year, she was chosen to walk for Full Figure Fashion Week. Now, 6 years later, Cambria gets to work with brands who are inspired by the diversity of the world we live in.
Victoria grew up in Princeton, New Jersey, was a straight A student, and trained in classical ballet at a pre-professional level. She thrived in her daily life, maintaining a very busy schedule, always working to be the best. She attended Dartmouth College, held down a corporate job in finance, and was a competitive yoga athlete. In the midst of training for a national yoga competition, Victoria’s health suddenly deteriorated rapidly. She experienced things that she never had before and after countless visits to urgent care she was none the wiser. Finally, after a week long stay in the hospital, Victoria was diagnosed with lupus nephritis in June 2016. She was 31 and thought that her life was over, however, she found that jt was actually a new beginning. Victoria is now a health and wellness entrepreneur, a full time yoga athlete, instructor, model, influencer, digital content creator, and lupus warrior. Victoria genuinely believes in the mind-body benefits of yoga and has found that it has helped her to overcome mental and emotional struggles and supports her in maintaining optimal physical health while managing lupus. Victoria recently underwent emergency open heart surgery in May 2023, and today she has never felt better, more alive, and ready to take on the world. Today, she lives to share her journey through teaching, education, and content.
Lexi Hamburger was born in Washington, DC, and now lives in Los Angeles. She is a freshman at the University of Colorado, Boulder, studying history and medicine. Her favorite activities include skiing, academics, golf, and community outreach. She was diagnosed with Lupus in 2021 as a sophomore in high school and is excited to participate with Lupus LA as a teen advocate.
Liz Morasso, LCSW, is a psychotherapist specializing in supporting teens and adults with chronic and acute medical conditions and their support systems. Diagnosed with lupus and RA at age 16, she combines personal experience and professional training for a unique approach to direct patient care, academic research, non-profit and hospital-setting consultation, and community advocacy. Liz worked as a medical social worker in pediatric and adult healthcare settings for 13+ years and has presented for national and international audiences on the interdependence of health and mental health. She finally took her advice and transitioned to private practice last year primarily to fill her cup with quality time with her two cats, puppy, husband, family, and friends.
Stacey Uberstine
Stacey graduated from California State University Northridge in 1990 with a bachelor of science degree in Health Administration with a computer science minor. One of her most notable jobs was helping to establish the Industrial Care Center which is operational at San Pedro Hospital. In 1993 Stacey transitioned into the insurance industry where she owned and operated her own State farm Agency for over a decade. Stacey was diagnosed with lupus in 1994. She stays abreast of the disease and all related medical breakthroughs and advances in research. Stacey has been an active donor and Board member of Lupus LA. She has a passion for patient advocacy within the lupus and breast cancer communities. Stacey is an avid sports fan, and actually met her husband through her work at State Farm. Sports seems to be a family affair, as her husband is a prominent sports attorney who has represented some of the most iconic figures in professional sports. Her passion for sports was passed on to her twin boys, Grant and Tyler. Grant was an avid athlete in high school, participating in lacrosse, baseball and swimming. Tyler’s passion for baseball took him to Northwestern University, where he earned a spot in the team’s starting rotation. He was later drafted by the Boston Red Sox. Stacey resides in Manhattan Beach, where she can be seen taking strolls along the beach. She is an avid reader and spends a considerable amount of time supporting philanthropic causes close to her heart related to lupus and breast cancer.
Born and raised in Los Angeles, Maurissa Tancharoen has taken an unusual path to her work in film and television. With a background in music and dance, she’s performed with the likes of Michael Jackson and Chaka Khan, and toured the country as a member of a R&B/Pop girl group with Motown Records. At Occidental College, she was heavily involved in the theater, and wrote and performed in several award-winning plays. After graduating, she worked for and learned from television veterans like David Milch and Steven Bochco, and immersed herself in all aspects of production. She then went on to write on Oliver Beene for FOX, and created and executive produced the MTV series Dancelife with Jennifer Lopez. With her husband and writing partner, Jed Whedon, she created and appeared in the Emmy/Hugo/Saturn award-winning musical, Dr. Horrible’s Sing Along Blog. Together, their credits also include such shows as Dollhouse, Drop Dead Diva, and Spartacus. They also created and served as show runners and Executive Producers of Marvel’s Agents of S.H.I.E.L.D. on ABC. The flagship Marvel Television series ran for seven Seasons. As an Asian-American female showrunner, her advocacy for diversity and representation is reflected in her work. Marvel’s Agents of S.H.I.E.L.D. is not only touted as one of the most diverse shows on television, but as a show that celebrates layered, intelligent, powerful women. Maurissa is no stranger to adversity as she has been living with Lupus since she was fifteen years old. She is the Co-Chair of the non-profit organization, Lupus LA, and is heavily involved in raising awareness and funds for those also suffering from this devastating illness. Maurissa still takes the occasional hip-hop class, makes music with Jed, acts in the shows she writes, and constantly marvels at their little superhero – their daughter, Benny Sue.
Lupus LA continues to make significant strides in support of medical research, patient services, and awareness, having raised over $13 million for the cause. With the expansion of digital patient education since 2020, Lupus LA has reached over 4.3 million individuals worldwide, addressing the urgent need for accurate information on lupus and its intersection with COVID-19.
Despite lupus’s prevalence, with over 60,000 individuals affected in Los Angeles County alone, awareness and understanding remain limited. Lupus LA’s initiatives, including the new Patient Advocacy Panel, are critical in bridging this gap and advancing the fight against one of the nation’s most common medical issues.
If you are interested in getting involved, or want to learn more about living with lupus, please join the Lupus LA Community.
Ready to share your lupus story? Contact the Lupus LA team at info@lupusla.org.
Lupus LA is a non-profit health organization committed to finding the causes of and a cure for lupus while providing support, services, and hope to all who suffer from this autoimmune disease. Through fundraising events, community support, and advocacy, Lupus LA aims to improve the lives of those affected by lupus, both in Los Angeles and around the world.
