In the Room: Using Social Media: Pros and Perils of Virtual Engagement

Dr. Karen Low is a consultant clinical geneticist based in Bristol with a special interest in genetic conditions associated with developmental delay, intellectual disability, and autism. She has conducted research on several rare syndromes, including PUF60-related syndrome and HUWE1-related syndrome, and has particular expertise in KBG syndrome. Dr. Low serves on the scientific advisory board of the KBG Foundation, organized a UK KBG Family Day in partnership with Unique, and has authored four patient information leaflets for families. She has led a national study in the UK of over 500 children with genetic neurodevelopmental conditions – GenROC. Through her clinical and research work, she has seen firsthand the challenges families face when limited information is available about their child’s genetic condition—particularly how knowledge gaps can affect clinical care.

Stacey Montgomery is a mom of four and grandmother of eight who became an unexpected advocate after her youngest son, Lucas, was diagnosed at age eight with Sanfilippo syndrome, a rare, fatal genetic disorder. Within weeks, she turned fear into focus — immersing herself in research, clinical trials, policy, fundraising, and awareness. What began as survival became leadership. Through community fundraisers and their online shop, Lucas Gear, Stacey and her family raised over $1 million to support rare disease research and families navigating medical complexity. Lucas passed away one week before his 21st birthday, after giving his family the gift of time to say goodbye. Today, Stacey speaks candidly about the realities of raising a medically complex child—navigating the systems, the burnout, the advocacy, and a depth of love most never experience.

Karen Morici is a rare disease advocate and mother to Dominic, who lives with PMM2-CDG. In her role at CDG CARE, she bridges families, clinicians, and researchers, ensuring caregiver perspectives remain central in scientific progress and clinical care. Grounded in lived experience and community leadership, Karen works to strengthen connection and collaboration across the rare disease space so families feel supported, informed, and empowered throughout their journey.

Tameka Simmons is the Founder and Executive Director of Through Evely’s Eyes, a South Carolina nonprofit supporting families raising children with rare diseases and complex medical needs. Inspired by her daughter Evely’s journey, she created the organization to provide whole-family support through immune-conscious play events, sibling mental health initiatives, caregiver wellness programming, and emergency assistance.