Why I'm Taking on This Challenge

As many of you are aware in 2025, my husband Bobby was diagnosed with an incredibly rare blood disorder called POEMS.

Before his diagnosis, Bobby went from being an active, healthy husband and father to struggling with debilitating symptoms that affected every aspect of daily life. What followed was a long and frightening journey of tests, uncertainty, chemotherapy, and ultimately a stem cell transplant.

Like many families affected by rare diseases, we'd never heard of POEMS until it turned our world upside down.

POEMS is so rare that many healthcare professionals may never encounter a case during their careers. This can lead to delays in diagnosis and treatment, leaving patients facing months, or even years, of uncertainty while their condition progresses.

Thankfully, Bobby received life-saving treatment through the NHS and the incredible team caring for him. While his recovery continues, we know that many other families are still searching for answers, support, and awareness of this devastating condition.

The Challenge

To raise awareness and funds, I'm taking on a HYROX Double Challenge.

A HYROX is a global fitness race that combines 8 x 1km runs with 8 functional workout stations, including activities such as skiing, rowing, sled pushes, burpee broad jumps, lunges and wall balls. It is designed to test both endurance and strength, making it one of the toughest fitness challenges in the world.

For my fundraiser, I'll be taking on a HYROX Double alongside my incredible friend Lillian.

There will be moments when I want to stop, slow down or give in. When those moments come, I'll be thinking about Bobs and the strength he showed throughout months of treatment, chemotherapy, and recovery.

Compared to what he has endured, a few hours of discomfort is nothing.

Why Your Support Matters

Every donation, no matter the size, will help support:

Greater awareness of POEMS Syndrome

Vital research into rare blood disorders

Support for patients and families navigating diagnosis and treatment

Better understanding of this life-changing condition

Rare diseases often receive far less funding and attention than more common conditions, yet the impact on patients and their families can be enormous.

Thank You

Our family has been overwhelmed by the kindness, encouragement, and support we've received throughout Bobby's journey.

If you're able to donate, share this page, or simply cheer me on, it would mean the world to us.

Together, we can help ensure that more people affected by POEMS Syndrome receive the awareness, support, and hope they deserve.

Thank you for supporting me, supporting Bobby, and supporting everyone affected by POEMS Syndrome.

Gemma 💙

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.