The Irvine Family Muscular Disease Fund

If you are coming to this page, you will know I am Stuart Irvine, and very recently, I was given a preliminary diagnosis of an extremely rare type of muscular disease, namely 'Miyoshi Myopathy' or Dysferlinopathy. I am still waiting on further genetic testing to confirm this diagnosis, but either way, I have seen how people are affected by these conditions.

This has hit me physically and mentally as I have always been very athletic. Over the past five years, I have seen my abilities diminish with progressive muscle loss in my calves and trapezius, making normal movements like walking very awkward and uncomfortable. Imagine having to actively think about walking at 38 years of age?

I am looking to start a charity to help individuals affected by muscular diseases, including those with the disease and carers.

I have set out a basic plan for what I want to create:-

Step 1 - Create an online presence and hub where people affected can talk and share experiences; what I have found is having a rare type of muscular disease, some of the most difficult parts are the unknowns, having a place to chat with other in a similar condition can give people some comfort.

Step 2 - Assist with diagnosis and treatment. Diagnosis of these diseases can take years, and I firmly believe that if you know what you are dealing with you can deal with it better. Private testing costs a lot of money, and today it can take 18 months to get a Genetic Test screening back, that's 18 months of someone's life with their head in limbo; private testing can cut that down to 3 months; I want this charity to help people get this turnaround.

Muscular disease is not as common as some diseases, which get millions of pounds worth of funding, but the people affected matter just as much.

I hope this never affects anyone reading this in any shape or form as it can strike at any age, and it knocks you for six... believe me.

Please help me raise some funds to get this off the ground and start making a difference.