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Supporting children, young adults and their families up to the age of 30

Supporting children, young adults and their families up to the age of 30

Childhood Tumour Trust

Research and awareness

Research

The future of care and treatment for those with NF1

How we help with research

At Childhood Tumour Trust (CTT), we are dedicated to supporting vital research into Neurofibromatosis Type 1 (NF1). We collaborate with institutions, including Manchester Metropolitan University and the University of Cambridge, where we’ve supported student research projects focused on improving understanding and treatment of NF1 including ‘Experience of Living with NF1 and attending a therapeutic camp‘ and ‘The lived experiences of parents accessing Special Educational Needs (SEN) support for children with NF1‘.

Additionally, we funded a PhD student Caitríona Plunkett as part of a Breast Cancer Awareness program ‘Beliefs, screening attitudes and breast cancer awareness of young women with neurofibromatosis type 1: A reflexive thematic analysis‘.

In partnership with the University of Cambridge’s Patient Led Research Hub, CTT worked on a project exploring the experiences of NF1 care across the UK. The results, presented at the British Paediatric Neurology Association (BPNA) Conferences, provided valuable insights into the current state of care for people with NF1.

How you can help with research

At Childhood Tumour Trust, we are dedicated to advancing research into Neurofibromatosis Type 1 (NF1) to improve care, treatments, and understanding of the condition. We actively work with researchers, hospitals, and academic institutions to support the recruitment of participants for important NF1 research projects.
One of the most powerful ways to support NF1 research is through recruitment. By joining research initiatives, you and your loved ones can contribute directly to new discoveries that can lead to better care and treatments. Signing up for the NF Registry through the Children’s Tumor Foundation and our CTT mailing list ensures that you’re informed of upcoming research opportunities where you can participate. We also promote projects through our online support group.
Your involvement matters – whether it’s by joining studies or sharing your experiences, you help researchers build a stronger understanding of NF1 and its impacts.
Join us in advancing NF1 research for a better future.

Awareness

At Childhood Tumour Trust, raising awareness about Neurofibromatosis Type 1 (NF1) is a vital part of our mission. Throughout the year, we highlight key awareness days and campaigns to educate the public, support those affected, and encourage action.

NF1 Awareness Month – May

May is NF1 Awareness Month, a global effort to increase understanding of NF1 and its impact. The month includes World NF1 Awareness Day on May 17th, a special day to bring our community together and amplify our message.
Here’s how you can join us in making a difference:
  • Wear blue and green: Show your support by dressing in the NF1 awareness colors at school, work, or in your community.
  • Host awareness events: Organise assemblies, team meetings, or community activities to share NF1 information and resources.
  • Light it up: Collaborate with local landmarks to illuminate buildings in blue or green, symbolising hope and solidarity.
  • Use social media: Share NF1 stories, facts, and resources using hashtags like #NF1Awareness
Get schools involved
Each May, we invite schools to join us in spreading awareness:
  • Wear blue and green: Encourage students and staff to dress in NF1 colours and raise funds for Childhood Tumour Trust.
  • NF1 presentation for children: Use our specially designed PowerPoint presentation for Primary Schools to introduce NF1 to children in an engaging, age-appropriate way. It’s perfect for assemblies or classroom sessions.
Download our PowerPoint Presentation

NF1 Breast Cancer Awareness Day – October 17th

In addition to May’s activities, we highlight October 17th as NF1 Breast Cancer Awareness Day. This day focuses on raising awareness of:
  • The increased risk of breast cancer at an earlier age for women with NF1.
  • The entitlement to earlier breast screening, beginning at age 40, for women with NF1.

Supporting related awareness campaigns

NF1 can cause or overlap with a variety of symptoms and conditions. To foster greater understanding and solidarity, we actively participate in other awareness campaigns organized by connected charities, including:
  • Brain Tumour Awareness
  • Autism Awareness
  • And many others relevant to the experiences of our community.

Hedgehog

A short film for NF1 awareness

We are excited to highlight the upcoming release of Hedgehog, a coming-of-age film that follows the story of a young girl with NF1. Currently making its way through film festivals, Hedgehog offers a unique and heartfelt portrayal of life with NF1, highlighting both the challenges and the strength of young people living with the condition.
In the meantime, a special behind-the-scenes video (watch below) provides a glimpse into the film’s conception and the creative process behind bringing this important story to life. We look forward to the film’s release, which will be available to watch in the near future.

Conferences

Staying informed to support our community

At Childhood Tumour Trust, we are committed to keeping our community updated on the latest developments in research, treatments and care for Neurofibromatosis Type 1 (NF1). Attending conferences, both NF1-specific and those of broader interest, is a key part of our work, allowing us to stay informed and share valuable insights with our members.

Why conferences matter?

By participating in these events, we:
  • Stay up-to-date on current and upcoming research projects related to NF1.
  • Build connections with researchers, clinicians and other organisations to collaborate on advancing NF1 care and understanding.
  • Gather knowledge on new treatments, care pathways and policy updates to share with the NF1 community.