It was a delight for AMEND CEO, Jo Grey, to visit Jennie Rayner recently to thank her for volunteering with us with a free hotel break from Room to Reward.
In 2018, Jennie was diagnosed with adrenocortical cancer (ACC). The following year, Jennie volunteered to star in our films about the ACC patient experience, sharing her personal story with the disease, as well as her intelligence and resilience in dealing with her life with ACC since diagnosis. Our films have been an essential part of our charity’s toolkit to help inform and support people suffering from this very rare cancer of the adrenal glands.
Since August 2023 Jennie has been one of our brilliant team of Peer Support Volunteers, but the only one for ACC. Jennie regularly hosts virtual meetings with anyone affected by ACC (patient or loved one) for the sharing of experiences. However, Jennie hasn’t stopped there. Together with hubby Paul, they regularly host in-person and informal meetings with others affected by ACC, usually in a nearby pub! Additionally, they are very active participants in and moderators on our private Facebook community for those with ACC in the UK, offering not just support, but a wealth of knowledge about the disease, how to get the most out of life after treatment, and how to cope during the punishing treatment regimen. Furthermore, we can always rely on Jennie and Paul to help with our Annual Patient Information Day by hosting the ACC session.
Sadly, Jennie hasn’t be able to hold her roles over the last two months after she was confirmed to have a disease recurrence, requiring surgery which resulted in complications. Despite all she’s been through and continues to go through, Jennie is dedicated to helping others, and despite only returning home from hospital very recently, she will be hosting her next Peer Support meeting this week.
Thanks to Jennie and Paul, we have one of the strongest ultra-rare patient communities in the UK.
Thank you and congratulations Jennie! 💚