I’m running my first marathon on the 16th October on behalf of The Marfan Trust. I’m running because like many people with Marfan Syndrome, my youngest sister lives every day in pain, and won’t ever be able to live a normal life. 

Despite being one of the most common connective tissue diseases in the UK, very few people have heard of Marfan Syndrome. Although everyone who has Marfans will have different symptoms, they are likely to have issues with their hearts, eyes and/or musculoskeletal systems. There is no cure, and even diagnosis can be a long process. You can read more about Marfans here. 

The Marfan Trust is the only charity in the UK that;

- Supports those with Marfan Syndrome & their families

- Undertakes medical research to enable better treatment of patients

- Provides educational information to raise awareness of Marfan Syndrome.