Meet the Voices Behind the Mission

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Kaniah is a Certified Integrative Nutrition Health Coach, Autoimmune Coach, and founder of Unique Guidance Nutritional Health Coaching in Norfolk, Virginia. She specializes in helping individuals improve their health through holistic nutrition, lifestyle coaching, and faith-centered wellness.

Living with dermatomyositis since 2007, Kaniah has transformed her personal journey into a platform for advocacy and service. She is a Community Health Worker, Mental Health First Aider, speaker, writer, Christian author, Myositis Ambassador, Virginia Support Group Leader, and Women of Color Leader. Through her work, Kaniah is committed to empowering others to overcome life's challenges, embrace whole-person wellness, and live with hope, purpose, and resilience.

Syreen is a scientist, public health expert, and entrepreneur dedicated to advancing health equity through science-driven solutions. She is the Founder and CEO of EquityBio Consulting, where she partners with researchers, policymakers, community organizations, and industry leaders to identify care gaps, translate research into action, and implement inclusive, evidence-based strategies. She also serves as Programs Manager at the Society for Women’s Health Research, overseeing a diverse portfolio of diseases and conditions that uniquely impact women. With expertise spanning epidemiology, clinical trials, laboratory management, public health practice, and research translation, she has worked with Fortune 500 companies, biotech startups, government agencies, and nonprofit organizations. Syreen is a nationally recognized leader in health equity, serving on advisory committees and working groups for the U.S. Food and Drug Administration (FDA), Clinical Trials Transformation Initiative (CTTI), Virginia Diabetes Council, AcademyHealth, George Mason University, the Rare Disease Diversity Coalition, and T1D International. She is currently pursuing a Doctor of Public Health in Implementation & Evaluation Sciences at Emory University and holds a Master of Public Health in Epidemiology from George Mason University and a Bachelor of Science from Randolph-Macon College. She is a member of the Beta Beta Beta Biological Honor Society and the Delta Omega National Honor Society.

Diagnosed with Necrotizing Autoimmune Myopathy (NAM) in 2022, a rare and life-threatening autoimmune disease, Kellie turned one of the most traumatic experiences of her life into a powerful purpose. Guided by her faith, strengthened by an exceptional medical team, and fueled by resilience, she is passionate about bringing hope to others facing rare disease diagnoses. With six years of experience in healthcare and a heart for advocacy, she now uses both her professional background and lived experience to educate, empower, and connect patients with the resources and support they need. A dedicated advocate for health equity, she is especially committed to addressing the disparities that impact communities of color and ensuring every patient feels seen, heard, and represented. Through her work, Kellie continues to amplify awareness of rare diseases while inspiring others to find strength, purpose, and community on their own journeys.

Jacqueline "Jacqui"  is a Long Island, New York resident and a resilient patient advocate living with immune-mediated necrotizing myopathy (IMNM). Following her diagnosis at South Nassau Hospital and the Hospital for Special Surgery (HSS), Jacqui has dedicated herself to transforming her personal health journey into a platform for empowerment. Living with a rare disease ( treatable but not curable )like Myositis requires a complex, ongoing regimen including infusions and physical therapy. Through this experience, she has become a strong proponent of a proactive approach to patient care. Jacqui is a proud member of the Myositis Women of Color Affinity group within The Myositis Association (TMA), where they focus on sharing resources, providing emotional safety, and building a supportive community.

Eniyome is a Nigerian photographer, visual storyteller, and dedicated community advocate whose work is driven by a passion for amplifying the voices of individuals and communities that are often overlooked. Based in Nigeria, she uses the power of photography to tell authentic stories that inspire awareness, compassion, and meaningful change. As someone deeply committed to improving the lives of people living with rare autoimmune diseases, Eniyome has become a respected advocate within the global myositis community. She is an active member of the Myositis Women of Color Affinity Group. As a member, Eniyome also co-founded Myositis Africa, an initiative dedicated to increasing awareness, strengthening patient advocacy, and building connections for individuals and families across the African continent who are affected by myositis and other rare autoimmune conditions. Committed to reducing stigma, Eniyome is dedicated to improving access to resources and fostering greater understanding of the challenges faced by those living with chronic and rare diseases. 

Jocelyn is a dedicated advocate for trauma education and awareness. With a deep commitment to creating trauma-informed cultures and promoting harm reduction, Jocelyn is a trusted consultant in this critical field. What sets Jocelyn apart is their personal journey. As a survivor of childhood sexual abuse, familial trafficking, suicide, and various traumas, they strive to dismantle stigma and shame surrounding mental health and sexual abuse. Through their experiences, they empower others to discuss risk reduction, prevention, treatment, and healing.

Jocelyn’s passion is not just a job but a calling. They believe we are more than our traumas. With expertise as a Public Health Practitioner and Certified Peer Specialist/Victim Advocate, Jocelyn specializes in trauma-informed training and outreach, fostering compassionate interactions in all aspects of life. Beyond their work, Jocelyn finds joy in Zumba, cherishes time with their chosen family, and pursues aspirations of becoming a published author. Their dedication to personal growth and positive change makes them an inspiration to all.

Aisha is a pediatric occupational therapist, patient advocate, speaker, wife, and mother. Following her 2022 diagnosis of dermatomyositis and interstitial lung disease, she transformed her personal health journey into a platform for advocacy, education, and empowerment. Drawing from both her clinical expertise and lived experience, Dr. Hall is passionate about raising awareness of rare diseases, promoting equitable healthcare, and encouraging patients to advocate for themselves. She has shared her story with healthcare professionals and patient communities, emphasizing the importance of early diagnosis, coordinated care, and patient-centered healthcare. Through her work, Dr. Hall is committed to fostering hope, resilience, and meaningful change for individuals and families navigating chronic and rare diseases.

Regina Davis is a dedicated advocate for the rare autoimmune disease community whose passion for service was inspired by the life and legacy of her late sister, who lived with polymyositis and interstitial lung disease (PM-ILD). As her sister's caregiver and steadfast supporter, Regina walked alongside her throughout her journey, including participating in an episode of Mystery Diagnosis and volunteering with The Myositis Association (TMA) during its Annual Patient Conference. Today, Regina proudly continues that legacy as a member of the Myositis Women of Color Affinity Group, serving as the Welcome Committee Chair, where the vision is centered around the three E's: Encourage, Educate, and Empower. Her lived experience as both a caregiver and someone who has experienced the profound loss of a loved one gives her a unique level of compassion, understanding, and purpose. Regina deeply understands the challenges families face and the importance of having advocates and allies who stand beside the rare disease community. She is committed to carrying her sister's legacy forward—not only through the work she does, but through the compassion she extends and the lives she continues to touch.