Webinars

In this inspiring Bridging the Gaps webinar, Dr. Frankie Herrera, founder of the 16p11.2 Genetic Syndrome Foundation, shares how one family’s search for answers grew into a global movement for advocacy, research, and care.

Drawing from her personal experience navigating her son’s delayed diagnosis, Dr. Herrera highlights the Foundation’s achievements, including the publication of clinical care guidelines, the development of an international research network, and the creation of a multidisciplinary 16p11.2 clinic at Boston Children’s Hospital.

She also presents a practical four-step advocacy framework:
✅ Find champions who can help advance your cause
✅ Build relationships before making requests
✅ Define clear, achievable goals
✅ Stay engaged for the long term

Throughout the presentation, Dr. Herrera emphasizes a powerful message: awareness leads to relationships, relationships lead to funding, and funding leads to clinics, research, trials, and better care. Whether you are a parent, caregiver, self-advocate, researcher, or healthcare professional, your voice can make a difference.

The webinar includes advocacy resources for both U.S. and international audiences and introduces exciting upcoming initiatives, including 16P Awareness Day on November 16 and the launch of regional ambassador chapters.

Download Now: 16p11.2 One-Pager

Learn how advocacy can create real change for individuals and families affected by 16p11.2 genetic variations.

Examining Movement in 16p11.2 Genetic Syndromes Using Video-Based Analysis
Presented by Dr. Lisa Yankowitz | Center for Autism Research, Children’s Hospital of Philadelphia

Motor differences are among the most common yet often overlooked features of 16p11.2 genetic syndromes. In this presentation, Lisa Yankowitz, PhD, reviews what researchers currently know about motor skills in individuals with 16p11.2 deletions and duplications and shares preliminary findings from new research using video-based gait analysis.

Learn how advanced computer vision and motion-tracking technologies can be used to measure walking patterns, identify motor differences associated with 16p11.2 deletion syndrome, and explore whether gait characteristics could serve as future biomarkers for research and clinical trials. The presentation also discusses connections between motor skills, autism traits, adaptive functioning, language development, and long-term outcomes.

In This Seminar:

✅ Why motor skills matter in 16p11.2 genetic syndromes
✅ What current research reveals about motor challenges in 16p11.2 deletions and duplications
✅ New findings on gait differences and movement patterns in 16p11.2 deletion syndrome
✅ The potential of video-based gait analysis as a research biomarker
✅ Research using data from the L16HTHOUSE Arbaclofen clinical trial
✅ Future directions for motor and biomarker research in neurodevelopmental conditions

This webinar is part of the Advancements in Research and Clinical Care for 16p11.2 Genetic Syndromes seminar series, hosted by the University of Washington and the Iowa Hawkeye Intellectual and Developmental Disabilities Research Center (Hawk-IDDRC) in partnership with the 16p11.2 Genetic Foundation.

The series brings together leading researchers and clinicians to share the latest discoveries, clinical insights, and emerging approaches to improving outcomes for individuals and families affected by 16p11.2 genetic syndromes.

Register for upcoming seminars in this series:
https://redcap.link/CTCSeries

Get the knowledge and tools to walk into the special education process feeling informed, prepared, and empowered to advocate for your child. Whether your child is just beginning the evaluation process or has had an IEP for years, this video is for you.

Rachel Baumann, MA-T, provides parents with a practical guide to understanding special education services, including the IEP and 504 plan process. Drawing on both professional expertise and personal experience, she explains the history and legal foundations of special education while offering actionable strategies to help families confidently advocate for their children.

In this session, you’ll learn:
✅ The differences between IEPs and 504 plans
✅ How the referral and evaluation process works
✅ What to expect during IEP meetings and how parents can participate effectively
✅ The importance of goals, accommodations, and educational supports
✅ The difference between earning a standard diploma and completing high school through an IEP pathway
✅ How educational decisions can impact future opportunities

Whether you’re new to special education or looking to strengthen your advocacy skills, this presentation is designed to help you better understand your rights, navigate the system, and ensure your child receives the support they need to succeed.

Understanding the science behind a rare genetic condition can be overwhelming, especially as research continues to evolve. In this session of our 16p Webinar Series: Bridging the Gaps, Dr. Peter Kannu explores what researchers know today about the 16p11.2 duplication and how having an extra copy of genes in this region may influence development, health, and behavior. We’ll discuss duplication-specific gene pathways, the brain and body systems most commonly affected, and why individuals with the same duplication can have very different strengths, challenges, and life experiences.

This webinar features Dr. Peter Kannu, Associate Professor and Chair of the Department of Medical Genetics at the University of Alberta. A medical geneticist with extensive experience caring for children and families affected by rare and complex genetic conditions, Dr. Kannu has dedicated his career to advancing our understanding of genetic variation, developmental conditions, and rare disorders. He brings valuable clinical and research expertise to the discussion of chromosome 16p duplications and the challenges faced by the duplication community.

Whether you’re a parent, caregiver, self-advocate, clinician, researcher, or educator, this webinar provides an accessible overview of the current science of 16p11.2 duplication and highlights important questions researchers are still working to answer. We are grateful to Dr. Kannu for sharing his knowledge and perspective with our community.

In this powerful session, Dr. Faranak Herrera, founder and CEO of the 16p11.2 Genetic Foundation, takes families inside the science of 16p11.2 deletion and breaks down complex genetics into information that can help us better understand our children and loved ones. Dr. Herrera explains how 16p11.2 deletion can influence brain development, neuroplasticity, movement, communication, learning, and behavior across the individual’s lifespan.

One of the biggest messages from this session is that different does not mean incapable. Understanding what is happening beneath the surface can help families and providers make more informed decisions about support and intervention.

• Knowledge gives families a stronger voice.
• Research gives us better answers.
• Collaboration moves our community forward.

Watch Session 4 and continue learning with us through the 16p Webinar Series: Bridging the Gaps. Together, we’re working toward a future where 16p11.2 knowledge is integrated into medical care, education, and community support.

Join Elise Hallett (Director of Strategic Partnerships & Community Education) for an inspiring conversation about the vision, goals, and impact of the 16p11.2 Genetic Foundation’s Education Department. Learn how we’re developing practical, evidence-based resources that empower families, supporting educators and healthcare professionals, and helping reduce fragmented care through shared knowledge.

During this session, we’ll discuss: why community education is one of the most powerful tools for improving outcomes; the resources being created for families, schools, and clinicians; how shared knowledge leads to better, more coordinated care; ways you can help by reviewing content, providing feedback, supporting translations, and sharing resources; meaningful ways to get involved without feeling overwhelmed. Whether you’re a parent, caregiver, self-advocate, educator, clinician, researcher, or advocate, your perspective is valuable. Together, we can build resources that truly meet the needs of our community.

Get a detailed walkthrough of the recently redesigned 16p11.2 Genetic Foundation website at 16pfoundation.org. Becky Oslund (Director of Initiatives, Operations & Digital Strategy) outlines Phase 1 features as well as the vision for the continuously evolving site to be a central, trusted hub of information and resources about 16p11.2 genetic conditions. Learn about future enhancements to the site and how you can get involved to support the Foundation.

Meet founder Dr. Franki Herrera as she discusses her personal journey with her son’s 16p11.2 deletion diagnosis and how the experience navigating a rare genetic condition without a clear path led her to create the Foundation. She outlines the common challenges that 16p families face when navigating care and explains how the 16p11.2 Genetic Foundation aims to address these gaps by connecting families, developing clinical care guidelines, and promoting scientific research and collaboration.