Voices of Bardet Biedl Syndrome
Real stories. Real people. Real hope.
Hannah
Artist | Designer | Photographer | Advocate
Hannah Schneider is a 24-year-old artist from Raleigh, North Carolina, whose journey with Bardet-Biedl Syndrome (BBS) began in late 2021, shortly after her younger sibling was diagnosed. A talented graphic designer and MFA student, Hannah uses her art as a powerful outlet to process her diagnosis and connect with others impacted by rare genetic vision loss. Through deeply personal and emotionally resonant work, Hannah explores the uncertainty of living with BBS while navigating vision loss, identity, and resilience. Her art not only helps her cope but has also created space for others to feel seen, understood, and less alone.
Read Hannah’s full interview and view her gallery here: Seeing Through Uncertainty - Hannah’s Journey
Check out Hannah’s website here: Hannah Schneider - Multimedia Designer
Robert
Living Fully with BBS | Resilience, Connection, and Purpose
Robert Stigile, from Los Angeles, California, was born in 1966 and has lived with Bardet-Biedl Syndrome (BBS) his entire life—though he wasn’t formally diagnosed until his teenage years. Now in his late 50s, Robert is a vibrant example of resilience, lifelong learning, and advocacy. He works for the City of Los Angeles and also trains agents for a visual interpreting service for the blind and visually impaired. Despite vision loss and the many challenges BBS can present, Robert lives life to the fullest. He hikes, deep-sea fishes, and is a licensed ham radio operator. He's also been a long-time leader in the blind community through his involvement with the National Federation of the Blind. In recent years, Robert has become more active in the BBS community, sharing his story to support others and encourage families navigating new diagnoses. His candid reflections on navigating vision loss, weight management, and late-in-life diagnosis—combined with his unshakable belief in living a full, joyful life—make his story a powerful source of hope and perspective for others.
Read Robert’s full interview here: Living Fully with BBS - Robert’s Journey
Christine
Advocating for Digital Accessibility Through Lived Experience
Christine, a Quality Assurance Analyst with enGen, shares her journey of being diagnosed with Bardet-Biedl Syndrome as a teenager and how it shaped her path toward a fulfilling career in digital accessibility. With support from CAI Neurodiverse Solutions, Christine uses her lived experience with visual impairment and neurodiversity to help make websites more accessible for everyone. From mastering screen reader technology to excelling in her role despite vision loss, Christine is an inspiring example of resilience, adaptability, and impact.
Read Christine’s story here: Success Story - Christine, Neurodiverse Solutions Candidate - CAI