Recently, the NIHR Mental Health Translational Research Collaboration (MH-TRC) Mission’s Children and Young People’s (CYP) Mental Health workstream supported the Beyond Diagnosis: NF1 Community Festival event at Manchester Museum.
This event brought families, young people and researchers together for a day focused on connection, collaboration and celebration of those with shared commitment to improving the future for children and young people living with Neurofibromatosis type 1 (NF1).
NF1 is a rare, lifelong genetic condition that causes tumours on nerve tissue. Tumours can grow anywhere in the nervous system, including the brain, spinal cord and nerves. There is no cure for NF1, and it is associated with neurodevelopmental conditions, including learning difficulties, autism and ADHD.
The event was designed to recognise and thank the many families who have contributed to MH-TRC Mission research studies into NF1. Whether through taking part in research studies or sharing experiences in discussion groups, the contributions of families continue to shape and strengthen our CYP Mental Health workstream research.
At the event, families had the opportunity to speak with healthcare professionals and charities who work closely with NF1 communities: Nerve Tumours UK and Childhood Tumour Trust.
These conversations enabled families to access trusted information, gain insights into clinical care and support pathways, and be signposted to relevant services and resources. Families were also encouraged to provide feedback about their research experiences and provide ideas on future NF1 research.
A variety of interactive stalls invited families to explore and learn more about NF1 research in an accessible and meaningful way. Visitors could try eye trackers, use microscopes and wear cat ears that responded to brain waves, offering insights into brain function in NF1.
Many of the families were grateful for the opportunity to meet other families with lived experience of NF1. Their conversations helped create a space for shared understanding, peer support and exchange of experiences.
Karen Cockburn, Charity Director of Nerve Tumours UK said, “It was such a lovely, brilliantly thought through, family event. I was delighted to see so many people there.”
The event was led by Dr Shruti Garg and the SPIN Lab team at the University of Manchester. Dr Garg, who leads two of the MH-TRC Mission’s CYP Mental Health work packages, said:
“We are thankful for the children, young people and families who took part in our event. We wanted to learn a lot from them but also to share what we are doing, so that we can ensure our research reflect the priorities of the NF1 community.
“The success of this event reflects the strength of the community and the importance of working together with communities to improve understanding and outcomes in NF1.”
For more information about the MH-TRC Mission CYP Mental Health workstream, contact Project Manager Sarah Ashton.
View images taken at the event:
