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17/09/2019

Gains, Pains and Slow-Moving Trains

by Marie Bowers

So how did I get here?

4th April 2018: I had accepted the role of Research Technician in Stuart Cobb’s Edinburgh Laboratory and this was my first day; I had the usual new girl nerves: Would the work be too hard? Would the other kids like me? Could I cope with all the homework? As for my route getting here, there are two journeys (a) 19 years in biopharmaceutical Research (with a brief hiatus managing a balloon decoration/fancy dress store in Edinburgh) and 2 years running a busy teaching laboratory at the Robert Gordon University in Aberdeen. Then with my partner being made redundant and finding employment in Glasgow, the Central belt was pulling me back. I had spent 10 years living and working in the capital at the turn of the new millennium. It was a great period of my life and it was time to see if Edinburgh was going to be good to me a second time. And (b) the more mundane, as like every weekday since, it began with a quick drive to Johnstone station, a short train journey to Glasgow Central and the often slow moving ScotRail ‘Express’ service from Glasgow Queen Street to Edinburgh Waverley.

The good news was the ‘kids’ and ‘teacher’ turned out to be lovely and after the initial shock of a new working environment, I immersed myself in my reasonably enjoyable daily routine. But some things are more painful and took more getting used to than others. The animal models of Rett are, like the condition they mimic, severe. My steepest learning curve was gaining sufficient familiarity and experience with the symptoms to recognise when a mouse was too sick to continue. At the same time ensuring we maximise the data generated, and the knowledge gained. I got there, and whilst working with the mice is often a challenge, their welfare and the quality of the science is of the utmost value and importance to me and the rest of the team.

June 9th 2018: A doubly auspicious day. Volunteering at the Reverse Rett 5k run at Archerfield Walled Garden followed by the Rolling Stones supported by Richard Ashcroft at Murrayfield. At Archerfield, I manned the children’s registration table for the 1k. For the first time, I met the amazing people that drive Reverse Rett towards its vital and ambitious goal of finding a cure for Rett Syndrome. For the first time, I saw girls with the condition alongside their devoted parents, siblings, extended families and friends. I had read the papers: apnoea, repetitive hand movements, loss of speech, inability to walk, scoliosis. These were distant concepts to me, until this day. My heart broke a little when I could see girls denied all the opportunities that I had, and my niece now has, because of a spontaneous mutation in a tiny piece of their DNA. But this wasn’t a day for sadness. Reverse Rett brought their usual gusto and enthusiasm to the event and everyone had so much fun. That evening I went to Murrayfield humbled to have met so many amazing people invested in raising the profile of Rett Syndrome and money to fund research. (P.S. The gig was great, but, well, I’ve always had a soft spot for Richard Ashcroft…).

November 9th 2018: Spurred on by meeting the Reverse Rett team, I volunteered at the Gala in London. It was great talking to donors about what I do, while collecting donations. I also had the honour of chaperoning Hazel Beiny around the hall as she showed off a diamond ring that was donated to the auction. What fun! One thing that struck me was just how much of their own money families willingly and generously donate to Reverse Rett. Their dogged determination to fund as much research as possible, to help their girls in the hope of seeing them live fuller and more fulfilling lives, leaves me in awe.

September 2nd 2019: I’ve gained settled status in Cobb Lab, I gain 10,000 steps by the pain of commuting, and I’m no longer the new girl. The team is expanding and I aim to provide a welcome as warm as that which was given to me to all who join our fab team. There are posters and papers in progress and I’ve even got my name on one. I will no longer be unGoogleable. All this on the way to finding a treatment for Rett Syndrome.

I went back to Archerfield this year and helped supervise the bouncy castle, filled water cups, and wrangled the winners of the kids race. I also gained the pain of the world’s worst sunburn, but that’s my own fault. Wear sunscreen folks! I’m also the rather proud owner of a purple Reverse Rett T-shirt. But the pain of seeing the progressive effects of Rett on the girls in the garden was sobering. It underlines the importance of the work we do. It makes getting up at 5.00am on a wet Monday morning a little less painful.

I know I will see many of you at the 10th Rett Gala in London on the 15th November. It will be a stellar event and Professors, academics and technicians will be out in force to inform, entertain and help raise much needed funds for this great cause.

The last 17 months have been immensely satisfying for me personally. It is a privilege to work in a world-class team and to have come into contact with some incredible individuals whose focus and drive have made me think about how I live my life and what matters.

So, has Edinburgh been good to me the second time around? It most definitely has, with clear gains, a few pains and some slow moving ScotRail trains.