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Lauren’s sister Hannah has Alport Syndrome, a rare kidney disease. Lauren and her family have been active fundraisers for Kidney Research UK and the Alports cause.* Earlier this year Lauren had the opportunity to visit Rachel’s research lab in Manchester and she has written up her experiences of the day.

What is Alport syndrome? A question I am oh so familiar with. I always use the same simple explanation. It’s a rare kidney disease where the filters in the kidney don’t work properly. The kidney is like a sieve and the holes in this sieve are too big and leak blood cells and protein. Very easy to understand. As easy as I thought it was going to be to find a cure!

My family and I have been really pushing on the fundraising front these last couple of years and our main aim was to help fund a project with renal researchers, Dr Rachel Lennon and Dr Michael Randles, who are based at Manchester University. The project, examining the matrix scaffold in the glomerular filters, started in September 2014. Once two years had passed, I was half expecting to have heard about some miracle cure. How very naïve of me!

In January this year, I attended a family information day in London held by AlportUK. This is where I met Rachel and Michael. They invited me up to Manchester University to see the Lennon Lab and find out where all the money we raise goes. At the end of February I made the journey there with my aunt in tow and what an eye opener it was for us both.

Both Rachel and Michael were so welcoming and it was lovely to meet these amazingly intelligent people who spend a lot of their time researching Alport Syndrome. Their 9-5 job could change so many people’s lives including my family!

First we joined a lab meeting. Here we met Will Loewenhardt (a material scientist) who is looking to build a bioreactor. This will create a better environment to test the kidney function and provide opportunity to see how kidney cells react to different drugs/tests. This is a huge project which could majorly impact research on kidney function. From Sahithi Kuravi (a post-doctoral scientist) we heard about stem cell testing and some of the complications that come with the research. Even a slight temperature change of just 2-3 degrees can throw the whole thing out. Dr Kuravi told us that while testing stem cells in dishes can provide many findings, it would be even better if there was a way of being able to create a whole kidney to test.

Then Michael gave us a tour of the lab. Just seeing the equipment that they use was quite overwhelming. We saw the incubators that they use to keep the cells in which act like a human body, and we saw the microscopes and even the freezers were interesting! Some of the equipment must cost thousands to run and service, let alone buy! Technology plays a major role in the research that’s carried out. We saw the filming of cells over periods of time so that their movements could be monitored. These were cells taken from a jellyfish that had been manipulated to produce a green fluorescent protein so that they could be identified under the microscope.

The visit made me realise just how many different avenues there are to explore with Alport Syndrome and just how persistent, driven and determined Rachel, Michael and their team are. I am certain I wouldn’t have the patience they have and am now even more appreciative of the work they and other kidney researchers are doing.

It was great to hear that Rachel has recently been awarded a prestigious Wellcome Senior Research Fellowship. This high level award gives clinical academics the opportunity to develop their research potential even further. And that is really promising for Alport patients and their families as it means Rachel and her team can continue with the vital research they are doing.

Michael explained to us all the processes that have to be followed in order for these type of research projects to get the go-ahead. What I learned was that it really isn’t as simple as people fundraising and passing the donations onto the researchers. Rachel would have had to have applied for the funding, accounting for all the investigators time, equipment etc. Her submission is then sent around to fellow researchers who have a say on whether the work she is requesting is worthy and it can get rejected at any time. Once approved she would have then been interviewed. It really does take time and persistence!

I felt very uplifted and even more determined to continue the fundraising my family and I do after our visit to the Lennon Lab. My aunt and I were delighted to see for ourselves how much research is underway and how promising the results may be. Being able to meet the wonderful people doing this was even more inspiring.

But fundraising does make a difference and there are many ways people can be involved in raising money and awareness.

Kidney Research UK’s London Bridges Walk is on 2 July this year and we already have a team of patients with Alport Syndrome and their families taking part in this together. Our aim is to stand out in the sea of purple in the white Action for Alports T-shirts. Doing the walk as a big group together will give us all an opportunity to get to know each other, ask

* Kidney Research UK originally funded Dr Rachel Lennon and her team to research Alports in a collaboration with Professor Jeff Miner at Washington University in St Louis, USA.