Jenny & Sophie: Loom Bands, Cakes & Community for Rare Disease Day
Jenny & Sophie: Loom bands, Cakes and Community
We are so proud of community champions like Jenny and her daughter Sophie who help us turn up the volume on this rare disease.
To mark Rare Disease Day, Jenny stood up in front of her local church to share her personal experience of living with PSC and receiving a liver transplant.
We know that speaking openly isn’t always easy, but Jenny’s courage helped shine a vital light on our rare disease, and she raised over £675 for PSC Support in the process!
Community Connections
"On Rare Disease Day I held a fundraising talk at my local church, where I shared my experience of living with PSC.
I talked about the difficulty of getting a diagnosis, the symptoms I had and how it affected my day to day life. I explained how it can affect people differently and that for some, PSC can progress to the point where they may need a liver transplant to help prolong their life. This led to me talking about the value of organ donation, how the process works and the importance of sharing your wishes with loved ones. I also talked about the liver transplantation process, following my own journey with 6 calls, the recovery and what this meant for my life afterwards.
Following the talk people enjoyed delicious homemade cakes, got the chance to have a go at the various activities we had set up and read the information about PSC. My daughter, Sophie, was inspired by another young girl she saw on the PSC Support Facebook page who made loom band bracelets to sell. So, she decided to do this too and made 30+ bracelets and key chains to sell and made bespoke ones on the day for anyone who wanted one. Proud mummy moment!
The feedback from the talk was great, with lots of people asking questions afterwards; many were amazed how important the liver is and how many jobs it does in our bodies. Several also went home and spoke to loved ones about organ donation and signed up if they weren't already, and others were fascinated to learn about PSC, all the different variants and the symptoms that often develop as it progresses.
The talk helped raise awareness of PSC and the valuable work PSC Support does. Thanks to my wonderful family and friends who helped run the event, we also raised just over £675 for PSC Support!
It’s great to be able to give something back for all the support myself and my family have received over the years and to help with the Mission 2030 campaign which is working towards funding research to find effective treatments and ultimately a cure for those with PSC."
Thank you Jenny and Sophie for sharing their journey as a family while raising vital awareness and funds.
