VHL UK/Ireland is excited to share ‘A Poem For Our Warriors’. The video consists of real VHL warriors and family members, all affected by the rare genetic condition. Featuring over 20 participants, who have experienced over 100 tumours between them, the video relays a heartfelt poem on the battle with VHL (von Hippel-Lindau Disease), and the long-term hope that treatment and research will bring to the lives of those affected.
The video was released to celebrate the end of VHL Awareness Month 2023 the month and the month aim is to raise awareness of the condition throughout the world.
VHL stands for von Hippel-Lindau disease, which affects 1 in 36,000, causing tumours and cysts (both benign and malignant) on areas of the body such as the brain, spine, pancreas, eyes and kidneys.
Please help us spread awareness by sharing the video on your social media channels and with your network.
Our video participants
A special thanks to our VHL warriors and family jj in members, who appear in the video, who have battled VHL:
Frankie Goddard, Biggleswade, England – battled brain, pancreas, kidneys, spine and adrenal gland tumours
Janice Hepworth, Retford, England – wife and carer of John Hepworth, VHL warrior who also appears in the video
Jerome Ramsey, London, England – VHL patient who has experienced brain, kidney, eyes and pancreatic tumours.
Julia Mate, London, England – experienced significant complications with her eyes, in addition to the brain, kidney, pancreas tumours.
Elliy Francis, Devon, England – diagnosed in September 2022 and experienced pancreas, brain and spine tumours.
Liz Wilson, Glasgow, Scotland – battled spine, kidney, eye and spinal tumours.
Roxanne Bonin, Stamford, England – experienced eye and pancreas tumours.
Bud Jang, Philippines – battled brain and pancreas tumours
Nigel Rowlands, Bethesda, Wales – diagnosed with VHL in March 2023, experiencing eyes, brain and spine tumours.
Rachel Amner, Kent, England – experienced brain, spine and eye tumours.
Brittani Hardy, Kent, England – daughter to Hayley Hardy, a VHL patient who has experienced numerous brain tumours, pancreas, kidneys, brain and eyes.
John Hepworth, Retford, England – battled brain, spine, kidneys, pancreas and adrenal tumours.
Kim Vaughan, Wakefield, England – affected by eye, brain and spine tumours.
Emily Ramsey, London, England – experienced eye hemangioblastomas, daughter of Jerome Ramsey, who also features in the video.
Andrew McNeilly, Cumbernauld, Scotland – husband to VHL warrior Sharon McNeilly, who sadly lost her battle this year. Sharon fought tumours on her brain, spine, adrenal, eyes and pancreas through the years, and during this time Sharon and Andrew were avid supporters of VHL UK/Ireland and raising awareness.
Georgia McDonough, Alfreton, England – affected by adrenal, brain, spine, kidney and liver tumours.
Sarah Mifflin, Hereford, England – battled brain, spine, kidneys, liver and pancreatic tumours
Kayleigh Stephens, Essex, England – experienced eye and spinal tumours, resulting in tetraplegic condition
Joyce Bonin, Peterborough, England – battled eye, endolymphatic sac and adrenal tumours. Mother of Roxanne Bonin, who also features in the video.
Kathryn Chapman, London, England – affected by eyes, brain, spinal, kidneys and pancreatic tumours
