Although these occasions are there primarily to educate, inform and update on developments in the field of mitochondrial research, they’re also an important chance for patients to connect with one another. Mito can be an isolating condition, so the social aspect of these events is incredibly valuable.
As always, we took the opportunity to spread the word about our charity. And whilst we work hard to alleviate some of that isolation through the support services we offer, we work just as hard to drive research forward, and that was pretty evident in the project updates given throughout the day.
The Lily Foundation had either funded, or been otherwise involved in, many of the projects mentioned. Overall, the message was pleasingly positive, with plenty of exciting developments going on in the world of mitochondrial research, as well as opportunities for patients to get involved.
In between the research updates, medical professionals gave clinical lectures, there was practical advice on aspects of mitochondrial disease such as fatigue, exercise and healthy eating, and an engaging Q&A session in which patients were able to put their questions to the experts.
Our Patient Engagement & Advocacy Manager, Katie, had a slot in the agenda to speak about our work, and during the breaks she and team members Liz, Janet and Tara were delighted to chat with plenty of new people, as well as catching up with some familiar faces.
Feedback at the end of the day was overwhelmingly positive, and the ‘in person’ element of the occasion, so much missed during the pandemic, is clearly a crucial aspect of dealing with this disease.
Sarah Holmes, Clinical Specialist Physiotherapist in Neuro-Muscular Diseases, felt it was an informative mix of science and research updates alongside in-person support. “With so much information, and so many symptoms and challenges associated with mito diagnoses,” she said, “it felt very important to have this face-to-face support”.
We couldn’t agree more. If you’ve been affected by mitochondrial disease and would like to find out more about upcoming patient engagement events, please ask your specialist mitochondrial disease centre or email Katie.
If anyone wanted to attend the event but couldn’t make it, you can watch a recording of the lectures.