Choose Your Language:
Posted by: The Sumaira Foundation in News & Announcements
In April, the team at Oxford University hosted their annual patient day for NMOSD and MOGAD patients and caregivers at the Aston Conference Centre. Rue and Jaycee – both NMOSD patients and TSF UK Ambassadors – attended and represented the Foundation. The passage below reflects Rue’s experience.
Attending the Patient Day, both as a patient and representing TSF, was a deeply meaningful experience. Being in a room with fellow patients, healthcare professionals, nurses and specialists felt incredibly grounding; it reinforced just how important spaces like this are.
Focused on NMOSD and MOGAD, the day was not only educational but also deeply humbling. We learned about ongoing research across the UK, particularly around the diagnostic process and current findings. It was encouraging to see the progress being made, while also recognizing the challenges that remain in achieving early and accurate diagnosis.
One message that stayed with me is that we are not alone – there is a whole community navigating similar journeys and that brings a real sense of comfort and strength.
I also had the opportunity to share my own journey – my diagnosis, my experiences, and how NMO has not defined or limited me. That felt especially important, as it’s easy for a condition like this to feel overwhelming, but it does not define who we are.
Alongside Jaycee, we spoke about the importance of community and creating safe spaces where people can truly thrive through TSF. We also shared the launch of our UK HCP initiative, which is very close to our hearts – supporting individuals through some of the most challenging moments.
We’re incredibly grateful to have had the platform to speak openly, connect with others, and be part of such an impactful day.
