Credit: Caroline Hernandez carolinehdz, CC0, via Wikimedia Commons.

A new public awareness campaign is seeking to raise understanding of neurodevelopmental disorders.

The Department of Paediatrics at the University of Oxford has today announced the launch of Genes, Brains, and Breakthroughs, a new educational campaign designed to raise public awareness and understanding of neurodevelopmental disorders through a series of accessible, family-informed video resources.

Developed in collaboration with families, clinicians, researchers, and international patient advocacy organisations, the campaign aims to improve public understanding of the genetic and neurological conditions that affect thousands of children and families worldwide.

Through clear, engaging, animated videos, the initiative explains complex topics such as neurodevelopment, genetic diagnoses, and emerging therapeutic approaches, including gene therapy.

The campaign responds to a growing need for trustworthy, accessible information about neurodevelopmental disorders, not only for affected families, but also for educators, healthcare professionals, policymakers, and the wider public.

Animations

At the heart of the initiative is a co-created video series of 16 short animations, each inspired by real questions and experiences shared by parents and carers.

By combining scientific expertise with lived experience, the campaign seeks to make cutting-edge research understandable, relatable, and relevant to everyday life.

Dr Narjes Rohani, lead researcher behind the animations, said: “Families consistently tell us that accessible information and public understanding are among their greatest unmet needs.

“This campaign is about opening up conversations around neurodevelopmental disorders, reducing stigma, and ensuring that advances in therapeutic genomics are communicated in a way that is meaningful and empowering for families and society as a whole.”

Critical

Melody Kisor, director of advocacy and education at the FamilieSCN2A Foundation, said: “I am a rare disease sister, bioethicist, health educator, and board-certified patient advocate. 

“In all of these roles, I have seen how critical it is for families to have access to clear, comprehensive, and accessible resources related to complex medical conditions and cutting-edge treatments.  

“Until this project, there was a dearth of trustworthy content for rare disease families to access and share.

 “When the FamilieSCN2A Foundation was asked to participate, I was elated at the opportunity to help fill that critical gap.” 

She added: “Under Narjes’ expert leadership, Genes, Brains, and Breakthroughs was a masterclass in inclusive, patient-centred collaboration. 

“Narjes patiently and respectfully engaged with families and advocacy leaders at all stages of the project, creating a safe place for all voices to be heard and considered. 

“We are so proud of the work that was done, and are so excited to share these adorable animations with the SCN2A community.”  

Kisor concluded: “These brilliant educational and communication tools will help caregivers with their own knowledge, but also in communicating critical information to extended family, teachers, and others in the care team. 

“Genes, Brains, and Breakthroughs takes the burden off of advocacy groups and parents to create educational content, and frees up precious resources for other endeavours.”

Valuable resource 

Kate Bailey, mother to 15-year-old Tilly who has a rare chromosome disorder called Tetrasomy 9p, a condition characterised by developmental delay and learning disabilities, delays in gross and fine motor skills, speech delay, hypermobility, and sensory processing disorder, was motivated to support the creation of the videos following her family’s “awful” experience at diagnosis.

Tilly also experiences extreme anxiety and is reliant on her mother for all personal care needs.

Kate said: “I wanted to take part in this project to help support such a valuable resource and contribute to helping ensure other families don’t have to go through the awful experience we had with no support offered at all.”

She added: “I think these videos are an invaluable resource for parents and also, importantly, an educational tool for the wider community.

“It is very lonely when your child has a rare chromosome disorder and others don’t understand what you are dealing with.

“I have loved watching the videos come to life and, as parents, to feel our comments were always listened to and taken on board.

“I am so excited to see the final versions out in the world, educating families, friends, teachers and medical professionals.”

The educational resources will be shared widely across digital platforms, healthcare settings, schools, and community networks to support greater awareness, understanding, and inclusion for individuals living with neurodevelopmental disorders and their families.

The animations are available here.