Hi everyone! Thanks for taking the time to visit my JustGiving page.

I'm running the London Marathon this year on behalf of Ring20 Research and Support UK. There are less than 150 adults and children in the world who have this condition as it is categorised as ultra-rare. This charity is hugely underfunded and relies heavily on fundraising to aid in the research of this condition. 

I've chosen to run for this charity as I work with a smashing young lady called Olivia, who was diagnosed with Ring20 Syndrome when she was 17 years old, following an earlier diagnosis of Epilepsy. Olivia has lived with this ultra rare form of Epilepsy for the last 5 years. Here is what she has to say:

"When I was 11 I was diagnosed with Epilepsy, after I started having absent seizures. I was put on medication but it didn't stop the seizures. As the years went on my seizures progressed into clonic tonic, amongst others. No medication seemed to help. When I was 17 I went to Great Ormond Street Hospital where I was tested for Ring 20 chromosome syndrome, which came back positive. My symptoms include seizures, cognitive regression and behavioural problems. I am a member of the Ring 20 research and support group where I can connect with other sufferers of ring 20, which is a huge support for me and my family as Ring20 is so very rare there is nobody who lives near me with this. My day to day struggles include daily seizures, extreme tiredness and difficulty socialising."

I am so lucky to work with this young lady as she proves day to day that this condition does not define who she is. Instead she lives every day to the full and has inspired me to help in any way I can. Including running a marathon which, let's face it, is no mean feat. I have never ran a marathon and I'll let you into a little secret....

I don't like running!!!

However, if I can help this charity and the research it needs, then I will have achieved my goal. So dig deep guys and please help raise awareness for Ring20 and donate. 

More information on Ring 20 below...

Best get running! See you at the finish line on April 23rd!

Thanks 

Siobhán 🏃‍♀️

R(20) is a very rare epilepsy syndrome, resulting in intractable epilepsy with less than 100 cases reported worldwide, though it is believed to be under-diagnosed. As such, families can feel isolated and many welcome the opportunity to speak with others in the same situation, wherever in the world, in whatever language. As there is no specific treatment that appears to be successful in controlling seizures, families are keen to be aware of and/or partake or help fund research projects into the condition. The aim is to facilitate fundraising for this cause to help those affected.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.