Volunteer and have your voice heard
It goes without saying that the people who volunteer for Kidney Research UK make a truly invaluable contribution to our organisation by giving us their time, energy and passion. But what we hear time and time again from volunteers is how fulfilling it is for them to know that they’re giving something back.
One person who can vouch for this is Richard Bennett from High Wycombe, who started doing his bit for Kidney Research UK as a teenager. Richard was diagnosed with the rare genetic condition Alport syndrome, which can cause kidney failure, when he was just six years old and grew up knowing the importance of research and charity work.
He said, “I first started as an event volunteer when my dad did the London Marathon to raise money for Kidney Research UK when he was 40. I was 13 at the time and went along to the marathon for a few years after that with a bucket to collect money.”
Experience of kidney disease
Talking about the genetic condition that stopped his kidneys from functioning, Richard says, “Alport syndrome can cause kidney failure, hearing loss and eyesight problems. My kidneys failed when I was 21, so it was a slow deterioration from my initial diagnosis.”
“I had my first transplant in 1997 when I was 21 and that was a kidney from my dad,” he tells us. “I was really lucky that I didn’t have to have dialysis as my dad was a live donor. But unfortunately that kidney never worked that well and my body rejected it.”
Richard, who’s married to Heather and dad to Jasmine, 21, and Leon,18 says, “The kidney eventually failed in 2003 when I was 27 and I had my biggest health issues then because of what came with the renal failure, such as blood pressure problems and encephalopathy (a disease of the brain that alters its function). I had something called uraemia, which you get when your kidneys aren’t working properly and the toxins aren’t being filtered out of your body, so it goes to your whole body, including your brain. And I had sky-high blood pressure which they couldn’t control. I was out of it for five days and it was the closest I’ve come to death. It was scary for everyone else but I didn’t know anything about it.”
Richard ended up on dialysis but went on to have a second transplant in 2004, when his mum gave him one of her kidneys. This operation was a huge success and Richard has been fighting fit ever since. So much so that he admits that a milestone birthday spurred him on to set himself some new goals. “When I was 40 I decided to do 12 events in 12 months to raise money for Kidney Research UK,” he says.
But physical challenges aside, Richard, 47, who has just competed in the World Transplant Games, explains his main contribution to the charity these days is as a member of the Lay Advisory Group (LAG), which drives and strengthens patient and public involvement in Kidney Research UK. He says, “Our objective is to give patient insight and put patient involvement at the forefront of research. We’re a diverse group and we’ve all got our own experiences. Some of us are kidney patients, some have family members who are kidney patients, some of us have been on dialysis and some of us have had transplants.”
As well as being on the LAG, Richard, who’s a procurement consultant working in education, recently supported the charity’s stand at the UK Kidney Week conference in Newport this June. He will also be attending the annual Kidney Research UK research conference, Driving Discoveries, which is taking place in Leeds in September.
Richard says, “I’d really encourage others to volunteer as it’s so rewarding. You feel like you’re making a difference and having a bit of influence over how things are done makes you feel useful.”
He adds, “Volunteering is also a great opportunity to work with the staff within the charity and it makes you feel fulfilled. I’m obviously really passionate about sharing the benefits of organ donation and if I can have a small say in how that happens and who’s targeted and how we can get more people involved, that feels like I’ve done something worthwhile.”
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