Lupus Voices Council

Veronica Vargas Lupo is a Strategy & Transformation Retail Associate Partner at IBM with 10+ years of client-facing experience. She is an expert in partnering with company leaders to develop and digitally transform their business capabilities and operational processes based on smarter, data-driven decision-making. Prior to IBM, Veronica worked as a buyer and planner for Dillard’s department stores for three years. Veronica has lived with lupus for 17 years. She has been an active member of the Lupus Research Alliance Young Leadership Board since its inception in 2010 and was honored in 2018 at our annual Handbag Luncheon as our “Woman of Achievement’. Veronica is originally from Venezuela, where she grew up until moving to the U.S. as a teenager. Lupus is dear to her not only because she has lived with it but also because her mother has lupus. 

Why Veronica says she is serving on the Lupus Voices Council: “Lupus ABC will, for the first time, truly give people who live with lupus and their caregivers a platform where they can be heard and involved in the treatment development process directly with all stakeholders. As someone who has lived with the disease for many years and knowing the wide range of symptoms that those of us with lupus experience, having a voice in this process is immensely important. It is so critical for our perspectives to be considered when designing clinical trials and measuring outcomes to develop tailored therapies in lupus.”

Judith Mills, M.B.S. is a biomedical scientist, a TEDx speaker, and adjunct professor at Kean University specializing in alopecia, disability, health, and lupus advocacy. She was diagnosed with lupus after three years with symptoms like fatigue, loss of appetite, body aches, and hair loss.

Seeking support, Judith first contacted the local New Jersey chapter of the Lupus Foundation of America (LFA) while pursuing a B.S. in Biology. She organized a student support group for individuals with disabilities and fundraising clubs for lupus.

In 2003, Judith formed Team MSU at Montclair State University for a local LFA walk. She also joined the now Lupus Research Alliance (LRA), supporting the NJ Walk with Us to Cure Lupus and participated in its Multicultural Task Force.

In 2011, she founded the nonprofit Butterfly Walkers Inc. while working towards a graduate degree in Biomedical Science. She has generated lupus awareness on television shows, serves with the Montclair Township Council, and has secured mayoral proclamations for lupus awareness in several NJ cities. Judith’s dedication has earned several awards from the LFA and the LRA.

Judith serves on the Lupus ABC to collaborate with fellow researchers and add her perspective as a person with lupus. She hopes Lupus ABC prioritizes precision medicine and encourages development of medications with minimal side effects.

Despite shattered dreams as a track star, Judith remains a runner, “not for track and field, but for the race of life.”

Dan is a patient advocate and an “E-Patient” (empowered, engaged, equipped, and enabled) who resides in New York City. He has more than seven years of experience in active patient engagement, efficacy, and self-management projects. His primary advocacy focus is on the male lupus patient empowerment programs in disease management, QOL (quality-of-life) paradigms and providing unique patient perspectives, as a full partner, in the novel clinical trial drug development ecosystem. Since 2016, Dan has been volunteering as a member of several patient advisory boards and as a Healthcare Consumer Reviewer, assisting various medical research centers, lupus organizations, and pharmaceutical companies. Dan is also involved with several organizations aiming to raise awareness of clinical trial opportunities including the Lupus Research Alliance, Lupus Foundation of America, Hospital for Special Surgery, Center for Information and Study on Clinical Research Participation, Patient-Centered Outcomes Research Institute, Global Healthy Living Foundation, and National Minority Quality Health Forum. He served as a Consumer Reviewer for the Lupus Research Program in the Congressionally Directed Medical Research Programs at the Department of Defense. Dan has a Master of Science degree in Information Systems from Pace University.

Dan is serving on the Lupus Voices Council because “this lupus whisperer hopes to see a cure for lupus in my lifetime.”

As former head of a large nonprofit and past Chair of the Lupus Foundation of America’s National Board of Directors, Cindy Coney is widely recognized for her work in health education and specifically her pioneering work in resiliency. A highly skilled speaker and trainer, she has traveled extensively sharing her first-hand patient perspective (she was diagnosed with the autoimmune disease lupus as a young woman) and professional expertise with thousands, delivering inspirational keynote speeches and educational training to patient, healthcare and nonprofit organizations worldwide, and acting as a patient advisor to government, pharmaceutical companies and research groups.

An articulate, educated and passionate voice representing patients, Cindy has testified before the FDA Advisory Panel to help secure the first new drug for lupus in 50 years-Benlysta and been selected numerous times to serve alongside doctors and researchers and been a Co-Chair on the U.S. Department of Defense Congressionally Directed Medical Program- Lupus Research Programs. She also served as a Patient Advocate on the International Task for to Define Remission in SLE.

She is excited to participate in the Lupus Voices Council and hopes to further the work of bringing patient voices into the treatment process. Her goal has always been to improve the quality of life for people living with lupus and their loved ones.

Jeanine Cox was diagnosed with lupus at 24 with symptoms of extreme debilitating fatigue, severe joint pain, systemic swelling, mild fevers, and flu-like symptoms. The flare ups became more frequent, and started to last much longer. She currently has stage IV lupus nephritis and was recently added to the kidney transplant list. Jeanine earned her Bachelor’s Degree in Nursing from Adelphia University and became a Registered Nurse in 1987. However, due to her lupus complications Jeanine had to make the difficult decision to leave her nursing career. Still, Jeanine used her nursing background to help generate public awareness for lupus by narrating Lupus Research Alliance’s Community Education Toolkit. And despite her serious medical issues, she participates in LRA’s yearly Take it to the Hill initiative, sharing her experiences with members of Congress to illustrate why lupus research funding is so critical.

Jeanine’s hope for the Lupus ABC is “to help expedite the production of more effective lupus treatments with minimal serious side effects to the patient.”

Carrie Austin Eberspecher is a person living with lupus. In her early 40’s she began experiencing debilitating fatigue. Initially brushing this off as “mommy fatigue” (she had two young daughters at the time), when additional symptoms followed, Carrie sought answers from a rheumatologist. According to Carrie, being diagnosed with lupus was frightening initially, but she found strength in finally knowing what she was dealing with. Treating the disease has been trial and error. But years after her diagnosis, she has had success from treatment with a biologic and feels fortunate to have her illness fairly under control.

For Carrie, advocacy began in college. She was asked by a professor to help spearhead a new initiative, The Center for Sexual Health, by educating student groups on campus. After college, this experience launched a career in pharmaceutical sales, where she worked with a team in bringing two new drugs to the marketplace. Later in her career, she moved on to sales with components of marketing and corporate training for an employee-assistance program. Most recently, she began advocating for the needs of people with lupus by serving on a patient advisory board organized by Lupus Therapeutics.

As a member of the Lupus Voices Council, she hopes to use her voice as a person living with lupus, along with her prior experience in health-related fields, to help bring patients’ needs front and center in new drug development.

Anna Fisch has lived with lupus since she was 28, dealing with lupus nephritis and a major flare occurring many years ago during pregnancy. She has been a loyal supporter of the Lupus Research Alliance for over 20 years. She started with the Young Leaders Board, co-chairing special events. Anna is particularly involved with making the annual Lupus Gala and Luminary Luncheon fundraising successes. She is also active in LRA’s advocacy initiatives for lupus research and served as a consumer reviewer for the Lupus Research Program at the U.S. Department of Defense. Having received her bachelor’s degree in psychology and art history from Barnard College, Anna earned a Master of Science degree in Nonprofit Management from the Milano School of Management and Urban Policy at The New School.

Anna has joined the Lupus Voices Council because she has “high hopes that the LupusABC, an innovative public private partnership, informed by patient consumer input, will improve the quality of life for people with Lupus by making new therapies available and moving us closer to a cure.”

Shanelle Gabriel is a touring poet, singer, and lupus warrior from Brooklyn, NY. Known for featuring on HBO’s Def Poetry Jam, she has shared her talent on countless global stages (from Lincoln Center to the Vatican), and has crafted artistic messaging for brands including Pandora, NFL Draft, BET and Hershey, among others. Diagnosed with lupus in 2004, she kept it a secret until she shared it through her poem “Vanity” in 2007. Since then, Shanelle has performed at numerous walks for lupus, spoken alongside the President of the National Institutes of Health, and has lobbied for patient rights on Capitol Hill. She was featured in USA Today on the importance of diversity in clinical trials and was highlighted in Women’s Health magazine. Shanelle has lectured at hospitals and biopharma companies on the power of patient voice and choice and is featured in a mini-doc on the Lifetime television network about her continued battle with lupus.

Shanelle also holds a Master’s in Education with a focus on Ed Leadership from Columbia University Teachers College, serves as an education consultant and curriculum specialist, and is the mother to three music and poetry-centered albums, which are available on all streaming platforms. Shanelle hopes to support the Lupus ABC in making patient-centered decisions that will lead to access to quality care for “lupies” everywhere.

Shane was diagnosed with lupus at age 37 after six months of doctors’ visits. First he was told he might have rheumatoid arthritis, followed by testing for leukemia. He was finally diagnosed when a bullous lupus rash started bubbling on his back. He has suffered from arthritis pain, brain fog, major fatigue, vision problems, digestive issues, and memory loss. To pay his way through college, Shane worked as a personal trainer. He graduated from University of California, Los Angeles with his Bachelor’s Degree in Economics and has been working in real estate investment, property management, and construction entrepreneurially for over 20 years. Shane has served on a lupus patient advisory board to bring the patient perspective into clinical trial design.

Shane’s greatest hope for Lupus ABC “is to help others achieve freedom from the burden of Lupus. To help research progress to help others with lifestyle changes that allow for healthy living with the diagnosis of Lupus. I truly believe with the right choices, habits, and medical help everyone can be free from regular suffering that occurs with Lupus. I am excited for the possibilities in research and technology as well as the natural methods that have been discovered to help with auto-immune diseases.”

Malinda Logan is a multi-hyphenate – a professional actor, and Founder and CEO of Coached by MLo which provides service and consultation in fundraising to organizations and filmmakers. Initially misdiagnosed, Malinda learned she had lupus while an undergraduate in college. Over the years, lupus manifested with her kidneys, lungs/oxygen intake, skin, typical inflammatory flares, brain fog and other complications. Due to long-term drug usage to control lupus, additional issues manifested with blood stagnation ultimately affecting her joints. When she was active on Lupus Research Alliance’s Young Leaders Board, Malinda also participated in several patient advisory boards to provide the patient perspective to clinical trial recruitment materials. She received her Bachelor of Fine Arts degree in Acting from Ithaca College and earned a Master of Science degree in Fundraising Management from Columbia University.

On a personal mission to reverse her autoimmunity, it is her hope “that with Lupus ABC, therapies will be expedited to treat lupus and patients’ needs and experiences will be heard, protected and at the forefront of medical practices.”

Erika Reyna is a strategic expert in cultivating and maintaining relationships with donors to support the mission and vision of nonprofit organizations that make positive impacts. She has a Bachelor of Science in Health Care Administration, and a Master of Arts in Administration with a focus on Industrial and Organizational Psychology from the University of Incarnate Word. After advocating for Congress to provide the funds needed to support research in lupus, Erika decided to return to school to pursue a Graduate Certificate in Non-Profit Management from Texas A&M University. She is currently working in fundraising and philanthropy as a Senior Development Coordinator at UT Health San Antonio, where she is responsible for a full range of administrative support for development activities at a senior leadership and presidential level. Additionally, she serves with Lupus Therapeutics as a liaison and an advocate for lupus patients and clinical trials as part of the PALS program.  

She was diagnosed at 33 after 7 years of medical gaslighting. Erika experienced symptoms ranging from joint pain and butterfly rash to dysautonomia, fatigue, and debilitating headaches. She is passionate about self-advocacy, access to healthcare and empowering patients with lupus. She lives with her husband and three children in San Antonio, Texas.  

Erika’s hope for the Lupus ABC is that “it shortens the time to diagnosis and ultimately finds a cure”. 

Elizabeth SantaCruz is a passionate contributor to the lupus community as mom for her daughter Miah who was first diagnosed with the disease at age eight after 24 months of incorrect diagnosis and treatment. She serves as Director of Outreach and Communication for LupusChat, a healthcare community of patients and caregivers affected in some way by lupus. In her role as lupus advocate, Elizabeth participated in the Patient-Focused Drug Development meeting held by the LRA along with the Lupus and Allied Diseases Association and the Lupus Foundation of America to provide the U.S. Food and Drug Administration with the community’s perspectives on drug development. Every year, Elizabeth meets with members of the U.S. Congress to discuss the importance of funding lupus research and patient support services. She also works yearly to have May be proclaimed Lupus Awareness Month in the State of New Jersey as well as her own town of Kearny. Elizabeth earned her Bachelor’s degree in Accounting from Berkely College.

As a member of the Lupus Voices Council, she hopes for better treatments and ultimately a cure for lupus. “I truly believe that we can make a difference as a community and we can impact future generations.”

Brian Ung is a pharmacist specializing in Health Economics & Outcomes Research and resides in Los Angeles, CA, where he champions lupus awareness and research. Diagnosed with lupus and lupus nephritis after a series of hospitalizations and seeing a multitude of specialists, Brian brings a unique blend of personal experience and professional expertise to his autoimmune advocacy work. He holds a Bachelor of Science in Pharmacology from the University of California, Santa Barbara, a Doctor of Pharmacy from the University of Maryland, Baltimore, and a Master of Science in Health Outcomes, Policy & Economics from the Rutgers School of Public Health. Brian also has worked within the pharmaceutical industry for several years.

Brian is committed to integrating the patient perspective into lupus research and treatment strategies as part of the Lupus Voices Council. He hopes the Lupus Voices Council can foster collaboration between patients, researchers, and industry stakeholders and accelerate progress toward a cure for lupus. Brian envisions the Lupus Voices Council as a trailblazer in public-private partnerships, setting a precedent for transformative healthcare initiatives.

Narae Yun balances lupus with a successful career as a director in global diversity, equity and inclusion at an international financial institute. She was diagnosed at 26 after five years of symptoms ranging from joint pain and butterfly rash to dysautonomia, fatigue and fluctuating mobility challenges. Narae has been actively involved with the Lupus Research Alliance for three years, serving on the LRA’s Young Leaders Board and effectively fundraising for lupus research as a team captain for the national Walk with Us to Cure Lupus grassroots initiative. She received her Bachelor of Arts degree in Psychology from Binghamton University.

Narae is now serving on the Lupus Voices Council in hopes “that combined efforts and collaboration across key organizations will accelerate progress for lupus patients to enable better outcomes and lead fulfilling lives. As someone who fights lupus every day, I’m looking forward to co-creating solutions that work for lupus patients alongside experts in various fields.”