POEMS Syndrome is a rare neurological condition that affects 200-300 people in the UK. Although it presents in similar way to other nerve conditions it is unique in being driven by the same kind of cells found in a blood cancer called myeloma. Once recognised, it can be therefore be successfully treated with many of the same drugs that are used for myeloma, and with good responses patients can expect to see an ongoing neurological recovery.

We are looking to raise money to fund this service in order to continue and expand this work. Funds would be used for:

-Development of a database review of clinical data, leading to ongoing research and guidelines

- Dedicated clinical research fellows to manage to manage the POEMS service and carry out research

- Education programme both for patients and doctors to improve awareness of POEMS Syndrome, prevent delays in diagnosis and improve treatment and management for patients in the UK and internationally.

This disease and this research is very close to our families heart as my husband was diagnosed with the disease in December 2025 after almost 2 years of steady decline to his health causing his symptoms to progress so aggressively he was bed bound unable to walk, eat or do anything basic by himself by the time he was finally diagnosed. Thankfully he is due to have his stem cell transplant this month which we hope will put him into a long term remission with this disease and we just pray that he will be able to live a long and happy life afterwards and gain the majority of his mobility and independence back. It will be an extremely tough and painful road ahead for him but this is his only chance at getting back some of the life he has lost with this disease. We have been very grateful for the support of UCLH, Barts and Queens Romford during his journey with poems and without their help John simply would not be here today.

I started running in June 2025 as a way to cope with everything that was happening to our family and I will be using my running journey and challenges I keep signing up to, to help raise funds, hopefully to stop further people being misdiagnosed or ignored in the future as the speed of diagnosis is so important.

Thank you all for listening.