Grace with Joanne Ward (NF2er, NF2 parent and COO of NF2 BioSolutions UK)

In this blog series we will be featuring our award winners and highly commended recipients from the Faculty’s ‘Outstanding Contribution to PPIE’ awards. Showcasing the inspirational and outstanding commitment to PPIE that has made a positive difference to our community and highlighting the amazing events, activities, people and groups from across the Faculty.  

Our next blog in this series will feature Grace Gregory, a final-year PhD student who has demonstrated an inspiring commitment to public engagement in the rare disease community. Grace won the Newcomer: Student category at the 2024 awards. 

Neurofibromatosis Type 2 (NF2) is a rare and debilitating condition that causes the formation of numerous brain tumours, leading to deafness, blindness, and paralysis. Recognizing a need for a safe online space for the UK’s NF2 community, Grace created a dedicated blogsite for the charity NF2 BioSolutions UK, where the NF2 community could share their stories and connect without fear of judgement. 

The blog was launched in 2022, and provides a platform tailored to the specific needs of those living with NF2. The blog has since grown to include over 60 posts and has attracted 3,500 views from a diverse audience, including individuals with NF2, their families, carers, researchers, and fundraisers. 

Previously the charity relied on social media platforms to relay information, share resources and allow people to connect with one another. However, the use of such platforms poses significant challenges for those with physical disabilities due to reduced accessibility, negative online interactions and financial barriers. Grace’s blogsite was designed to offer an accessible, judgment-free space for sharing real-life experiences. 

Ensuring the site truly served the needs of the entire NF2 community, the blogsite has several features to increase accessibility and inclusivity. For example, all videos linked on the site are captioned for the Deaf, and text and images are accompanied by verbal descriptions for those with visual impairments. 

The impact of the blog has been profound and wide. It has provided crucial support to parents of newly diagnosed children, who have reached out to the charity for additional resources. The blog also hosts an ongoing series on the real-life experiences of individuals undergoing treatment with Avastin, the only drug currently available for NF2. These personal stories have been so impactful that larger charities, such as Nerve Tumours UK, have featured the blog, further raising awareness of the challenges faced by those with NF2. 

Grace has ensured that all publications from the University’s NF2 research team are summarized in lay terms on the blog, keeping the NF2 community informed about advances in the condition. This will not only help to secure further funding for future PhD studentships but will also strengthen the relationship between the research community and those directly impacted by NF2. 

In recognition of her ongoing commitment to the community, Grace has been appointed as a Trustee of NF2 BioSolutions UK. As the blogsite continues to grow in popularity, Grace’s initiative is a shining example of how public outreach can be conducted in the rare disease community. 

Grace’s initiative exemplifies how a single person’s vision and dedication can make a lasting difference in a rare disease community.  

To find out more about PPIE: watch our short film, sign up to the monthly Public Engagement Digest, visit the PPIE blog, or contact srbmh@manchester.ac.uk.     

To read more about other PPIE Award winners visit here.  

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