BBS Foundation Conference 2026

Event Archive

A gathering of families, researchers, and specialists united by a shared mission. Explore recordings and stories shared through the 2026 gathering dedicated to Bardet-Biedl Syndrome.

Hosted by the BBS Foundation · Washington DC · Proudly sponsored in part by A Race Against Blindness

A Shared Journey

For families affected by Bardet-Biedl Syndrome (BBS), coming together is profound. The 2026 BBS Foundation Conference provided a space to connect, learn from leading researchers, and find strength in a community that truly understands.

As a BBS-affected family, A Race Against Blindness was honored to attend and proud to support this vital event. In addition to serving as a sponsor and providing media coverage to share these moments with the wider community, we provided attendance reimbursements that reduced the financial burden for participating patients and families.

Connecting Families Worldwide

BBS Conference 2026 – Connecting BBS Families Worldwide

This conference recap highlights families, clinicians, researchers, and Hall of Fame inductees from the 2026 gathering. Viewers will learn about recent BBS research developments and the educational content released from the event.

Expert Presentations & Community Voices

Watch 15 conference recordings featuring clinicians, researchers, family perspectives, and people sharing lived experiences with BBS.

BBS Foundation Conference 2026 Opening Welcome | "Monumental Moments" in Washington DC

Speaker: Tim Ogden

The opening welcome frames the conference as a growing BBS community gathering. Viewers will hear how the event is focused on mutual support, accessibility, and shared progress.

BBS Foundation Conference 2026: Linda Rickard Inducted as First Hall of Fame Honoree

Speaker: Dr. Steve Johnston, Linda Rickard

Linda Rickard is inducted as the first BBS Hall of Fame honoree. Listeners will hear her reflect on early efforts to connect and support families affected by BBS.

BBS Foundation Conference 2026: Dr. Val Sheffield's Hall of Fame Induction

Speaker: Dr. Erica Davis and Dr. Val Sheffield

Dr. Val Sheffield is honored for foundational BBS genetics research. Viewers will learn about his early locus mapping and collaboration with affected families and researchers.

BBS Foundation Conference 2026: Dr. Bob Haws Hall of Fame Induction

Speaker: David Pothier, Shawnie Pothier, Dr. Bob Haws

Dr. Bob Haws is honored for helping develop specialized BBS care. Viewers will hear about his role in establishing the Center of Excellence and the CRIBBS registry.

BBS Foundation Conference 2026: Dr. Ronald Roepman on the Science of Cilia and BBS Research

Speaker: Dr. Ronald Roepman

Dr. Ronald Roepman explains how cilia function in cells. Viewers will learn why molecular research on ciliopathies, including SCAPER, may inform diagnosis and potential treatments.

BBS Foundation Conference 2026: Dr. Stavros Garantziotis on Cilia, Lung Function, and BBS

Speaker: Dr. Stavros Garantziotis

Dr. Stavros Garantziotis discusses research suggesting that impaired primary cilia may affect lung development and repair. Viewers will learn about the need to study lung function in BBS.

BBS Foundation Conference 2026: Inside the AXIS Trial — BBS1 Gene Therapy for Retinal Degeneration

Speaker: Dr. Victor Hernandez

Dr. Victor Hernandez describes the AXIS Phase 1/2A study of subretinal BBS1 gene therapy for retinal degeneration. Listeners will hear details about its safety-focused dose-escalation design.

BBS Foundation Conference 2026: BBS10 Gene Therapy Breakthroughs in Vision and Behavior Research

Speaker: Dr. Ying Hsu

Researchers present preclinical AAV8 BBS10 gene-augmentation findings in mice. Viewers will learn about behavior research intended to improve the study of developmental and behavioral differences in BBS.

BBS Foundation Conference 2026: Dr. Jeremy Pomeroy on CRIBBS Registry Research

Speaker: Dr. Jeremy Pomeroy

Dr. Jeremy Pomeroy explains how long-term CRIBBS registry data supports research. Viewers will learn about the diverse and interconnected clinical impacts of BBS and rare-disease trials.

BBS Foundation Conference 2026: A Researcher's Personal Journey From RP Diagnosis to BBS5 Discovery

Speaker: Ruya Dogru

Ruya Dogru shares her journey from childhood retinitis pigmentosa diagnosis to BBS5 identification. Listeners will hear about her retinal-degeneration research on Müller cells.

BBS Foundation Conference 2026: Nathanael Ogden on Vision Loss, Advocacy, and Thriving with BBS

Speaker: Nathanael Ogden

Nathanael Ogden describes adapting to BBS-related vision loss and preparing for college. Viewers will hear about self-advocacy, independent-living skills, and early coordination with support services.

BBS Foundation Conference 2026: Katherine Blalock's Story — Living Boldly with BBS, Blindness, and OCD

Speaker: Katherine Blalock

Katherine Blalock shares how she navigates BBS-related blindness, anxiety, and OCD. Listeners will learn about her use of accessibility tools and how she pursues her interests and work.

Bardet-Biedl Syndrome: Tiffany’s Late Diagnosis Story

Speaker: Tiffany Manosh

Tiffany Manosh discusses receiving a late BBS diagnosis. Viewers will hear about gaining blindness skills and community support, and building an active independent life.

BBS Foundation Conference 2026: Therapies, Optogenetics, Metformin, & the Future of Vision Treatment

Speaker: Dr. Katie Cording and Dr. John Ash

Dr. Katie Cording and Dr. John Ash discuss gene-agnostic approaches to retinal degeneration in BBS. Listeners will learn about optogenetics and neuroprotective strategies.

Tim Ogden: Recapping the Science & Rallying the BBS Community | BBS Conference 2026

Speaker: Tim Ogden

Tim Ogden recaps scientific gaps and priorities in BBS research. Listeners will hear about community fundraising, advocacy, and support for people affected by BBS.

Deep Dive Conversations

12 educational podcasts hosted by Dr. Steve Johnston (co-founder, A Race Against Blindness), offer perspectives on genetics, coordinated care, research priorities, diagnosis, and family experiences.

BBS Foundation Conference 2026: A Conversation with Tim Ogden on the BBS Foundation

Guest: Tim Ogden

Tim Ogden discusses the BBS Foundation's growth and Centers of Excellence. Listeners will learn about genetic diagnosis, community outreach, and research priorities.

BBS Foundation Conference 2026: Dr. Erica Davis on Genetic Testing & Why Every Patient Is Different

Guest: Dr. Erica Davis

Dr. Erica Davis explains BBS features and genetic-test interpretation. Viewers will hear about the Lurie Children's BBS Center of Excellence and research on BBS gene variants.

BBS Foundation Conference 2026: Dr. Bob Haws on Kidney Health, Transplants, and Nephrology

Guest: Dr. Bob Haws

Dr. Bob Haws discusses kidney involvement in BBS and recommended monitoring. Listeners will learn about transplant outcomes, coordinated nephrology care, and remaining research needs.

BBS Foundation Conference 2026: Dr. Seema Kumar on Hyperphagia, Weight Management, & More!

Guest: Dr. Seema Kumar

Dr. Seema Kumar discusses coordinated BBS care, hyperphagia, and weight management. Viewers will hear about related endocrine monitoring and treatment options families may discuss with their medical team.

BBS Foundation Conference 2026: A Father's Story - Diagnosis & the Fight for Vision Research Funding

Guest: Kyle

Kyle shares his family’s path to his son Camden’s BBS10 diagnosis. Listeners will learn about their specialist care, community connection, and support for vision research funding.

BBS Foundation Conference 2026: Two Dads on Diagnosis, Fear, and Finding Hope with BBS

Guest: Steve Johnston, Jason Fenol

Steve Johnston and Jason Fenol discuss Ronan’s BBS1 diagnosis and the uncertainty families face. Viewers will hear about the roles of support, awareness, and retinal-disease research.

BBS Foundation Conference 2026: Dr. Reiter Explains the BBSome - The Molecular Machine Behind BBS

Guest: Dr. Reiter

Dr. Reiter explains the BBSome’s role in cilia. Viewers will learn how ciliary dysfunction may relate to variable BBS features, including retinal and kidney disease.

BBS Foundation Conference 2026: Dr. Arlene Drack on BBS10 Gene Therapy & What's Next for BBS

Guest: Dr. Arlene Drack

Dr. Arlene Drack reviews early BBS10 subretinal gene-therapy experience and pediatric vision-testing research. Viewers will also hear about preclinical work for additional BBS treatments.

BBS Foundation Conference 2026: Dr. Hernandez on the BBS1 AXIS Trial & Gene Therapy for Obesity

Guest: Dr. Victor Hernandez

Dr. Victor Hernandez discusses the enrolling AXIS trial for BBS1 retinal degeneration. Viewers will also learn about preclinical BBS1 gene-therapy research targeting obesity.

BBS Foundation Conference 2026: Dr. Kelsie Offenwanger on Behavioral Health, Autism Screening,+ More

Guest: Dr. Kelsie Offenwanger

Kelsie Offenwanger discusses tailored behavioral-health evaluations, autism screening, and telehealth. Viewers will also hear about support resources for people with BBS and their families.

BBS Foundation Conference 2026: Dr. Pomeroy - New BBS Diagnostic Criteria & Centers of Excellence

Guest: Dr. Jeremy Pomeroy

Jeremy Pomeroy explains updated BBS diagnostic criteria and the role of genetic testing. Viewers will learn about collaboration among BBS Centers of Excellence.

BBS Foundation Conference 2026: Dr. Ying Hsu Explains How Gene Therapy Works for BBS10 Vision Loss

Guest: Dr. Ying Hsu

Ying Hsu explains how AAV-based BBS10 gene therapy is designed to deliver genetic material to retinal cells. Viewers will learn how the treatment is administered through subretinal injection.

Conference Gallery

Moments from the Weekend

Glimpses of connection, recognition, and shared purpose.

Stay Connected with the Community

We are deeply grateful to the BBS Foundation for hosting this incredible event. To learn more about their work, upcoming events, and resources for families, please visit their website.