Event Photography - Myotubular Trust Fund Raiser

I’ve recently had the pleasure and honour to be included yet again in documenting Myotubular Trust’s event. This time held in the Houses of Parliament the event has brought the one and only Justin Webb who was compering the speakers of whom one was Jane Ellison, the MP who sponsors and supports the Trust in the cure-research projects.

It makes it especially personal to come to an event like that due to my son who is affected with MTM (Myotubular Myopathy). You can find out more about the trust and the condition itself here, on the Trust’s website. There is hope though and it wouldn’t be without the Trust, people who raise awareness, the politicians, celebrities but also everyday heroes who fight their battles with the condition on every day basis, that make it all different. There is a cure and projects to support running the trials in the near future. You can imagine how that makes us, parents, friends, family, etc. feel… We are all in this together and we’re all finding strength. The organisation that takes the lead in finding the cure is Audentes who have recently started a portal/website where you can read about my son, Milosz but also other extremely brave children in the UK affected by the condition. There aren’t many as it is a very rare one however this makes it even more special to be looking into the future. And not to feel abandoned and alone in the struggle.Special thanks to Melanie Spring and Anne Lennox who invited me to join them yet again. You are the best!