I had never thought of Edinburgh as a hub for biomedical innovation, prior to coming here my first thoughts of the place would more likely have been Braveheart, kilts, haggis and golf. Arriving I half expected to see bearded bagpiping Scots roaming the streets looking for English to harass. As intriguing as that might have been, what I did see is ultimately much more exciting.
In the last two decades Edinburgh has emerged as a center of research fueling the ongoing biological revolution. It rose to prominence with Dolly the sheep, the first animal cloned from adult cells. While cloning itself was a monumental step forward, Dolly may have played an even more important role in spawning the field of regenerative medicine and pushing stem cell research forward. Also, as you’ll see below, Dolly wouldn’t be the last animal to play a part in advancing research in this medieval wonderland.
My first meeting was with Prof. Douglas Armstrong and Dr. Lysimachos Zografos. Prof. Armstrong is part of the EU backed Human Brain Project, a broad collaboration of institutions throughout Europe trying to do for our brains what the Human Genome Project did for our understanding of our DNA. However the brain is a much more ambitious problem to tackle and such broad collaborative efforts will be critical if we are going to make any serious progress in understanding the greatest frontier in biomedical science, the human brain.
Dr. Lysimachos is the founder of Parkure, which he built to advance discovery of disease modifying drugs in Parkinson’s disease. He has done so by breeding a species of genetically modified fruit fly to give them Parkinsonian like symptoms. The fruit fly is commonly used as a model organism in the study of disease because we have a good understanding of its genetics, they are easy to keep, and have relatively short life spans. Such animal models play a key role in drug discovery as it is too dangerous to experiment on humans and is often too costly and time consuming to try on mammals. (for more on Parkure see this article from Science of Parkinson’s.)
My next stop was with Prof. Catherina Becker who works on another animal playing an important role in disease research, zebrafish. Early medicine studied plants to see what they made that could be useful, from that spawned the entire pharmaceutical industry. Now we are looking through the animal kingdom for any beneficial traits that we might be able to use. Zebrafish are amazing little creatures being widely studied for their regenerative properties as they can regrow almost any part of themselves. Prof. Becker believes they will play an integral role in first helping us understand how to repair spinal cord injuries, and eventually they could be useful in even more complex problems like regrowing dead brain cells to treat neurodegenerative disorders.
Regenerative medicine is a booming industry that is filled with promise, but any treatment that comes out of it will carry a number of risks that need to be overcome. A good example of this is the work of Prof. Steven Pollard who studies neural cell growth to understand how tumors form. It is a herculean task because, if the brain wasn’t complex enough, studying cancerous growths in the brain adds another bewildering layer of complexity to it. Staring at a chart on the wall of his office showing the hundreds of different known pathways associated with cancer and thinking about trying to combine that knowledge with everything we know about the growth, development and maintenance of neural tissue made me realize the mountain of obstacles still in the way. It was a sobering reminder of all the work that still needs to be done before regenerative medicine is able to live up to its potential.
Next I went the Anne Rowling Regenerative Neurology Clinic, a gift to the University of Edinburgh from J.K. Rowling in memory of her mother who had multiple sclerosis. Edinburgh was where J.K. Rowling wrote the first Harry Potter book, the fifth most popular book in world history, and walking the Gothic streets of Edinburgh it is easy to see how she drew inspiration from the city for the setting of her books.
At the clinic I met with the director, Prof. Siddharthan Chandran, and Shuna Colville, the research project manager. The clinic was built with the goal in mind of bringing neurodegenerative diseases together under one roof as they often overlap in both their symptoms and in their underlying causes. Clinics such as these are going to be increasingly important as society is on the brink of an epidemic of neurodegenerative diseases.
Prof. Chandran firmly believes that the answer to neurodegeneration lies in the patients themselves. He is a staunch advocate of patient centered healthcare and the Rowling Clinic is a reflection of that belief. Too often patients are detached from research and see it just as something scientists do. Prof. Chandran sees patients as integral parts of research and he wants every patient to understand the role they can play by becoming active participants in clinical trials. Each person diagnosed holds a part of the puzzle within them and by participating in trials, donating tissue, and engaging with researchers, they can speed discovery of new therapies while empowering themselves by getting a better understanding of the disease they face.
I also got a chance to meet with Prof. Ken Bowler, chair of the Edinburgh Research Interest Group which encourages patients to engage in research through dialogue, discussions and seminars. Over the years they have attracted some big names in the PD research community and this year have managed to snare Prof. Andrew Lees for the annual Edinburgh Parkinson’s lecture in September. Prof. Bowler was himself a particle physicist who spent his career trying to understand the smallest pieces of matter in the universe. He now applies some of the skills he picked up in his career to further research in Parkinson’s disease as he serves as a grant reviewer for Parkinson’s UK.
Later I met Dr. Maria Doitsidou who works with another model organism, the C elegans. This microscopic worm is one of the few organisms that has had its connectome mapped, giving us a clear picture of its entire nervous system. This means we can track many of the downstream affects that occur when we alter its genetic makeup. Dr. Doitsidou uses them to better understand Parkinson’s disease by genetically engineering them to have fewer dopamine producing cells. She showed me the worms under a microscope and I got to see the transparent little guys wriggling and squirming around in their petri dish homes. She then replaced them with the mutated worms and an odd sense of connection and empathy for these parkinsonian ones came over me as I watched them unable to move about with the same fluidity as their non-mutant cousins.
I also got to meet Martin Taylor who started the Parkinson’s Research Interest Group, a page dedicated to research surrounding this disease. It has grown to become one of the best sources of research news for Parkinson’s disease out there and a sorely needed platform to help people cut through all the noise and learn about the most pertinent research.
I spent my last day with Dr. Tilo Kunath(pictured with me above looking at dopamine cells differentiated from iPS cells), who took me on a tour of the MRC Centre for Regenerative Medicine. It is an incredible research center helping to transform Edinburgh into a global hub for regenerative medicine as it has attracted an interdisciplinary group of researchers working on a wide range of regenerative medicine techniques. Dr. Kunath’s work focuses on growing dopamine cells from embryonic stem cells and ensuring that the cells produced can be transplanted safely into new hosts. I also got to hear presentations from three of his PhD students, Yixi Chen, Ammar Natalwala and Stephen West. It was inspiring to see the next generation of researchers already making tangible progress in the study of this disease.
Asides from all of the important work that Dr. Kunath and his students are doing, just as laudable is his approach to combating this disease. Like many of his colleagues in Edinburgh, he strongly believes in patient engagement as well as the importance of collaborating with colleagues from all around the world. The scientific ecosystem they have built in Scotland is a welcome change from some of the closed lip centers in other parts of the world. If the internet has taught us anything, it is that openness, collaboration, and engagement with people all over the world often leads to novel solutions of age old problems. I wish more researchers embodied this ethos as well as Dr. Kunath.
The last stop that day was a private tour from Dr. Hille Tekotte of the newly built genome foundry at Edinburgh University. The foundry is helping bring synthetic biology one step closer to fruition with what will be a completely autonomous platform that allows researchers to assemble large DNA fragments, giving us the ability to accelerate the engineering of life itself. Synthetic biology is a burgeoning field that is opening up a wide range of new possibilities including the creation of cleaner and more efficient biofuels and biomaterials, and better medication through improved vaccines and antibodies.
So long Edinburgh, now when I think of you I’ll remember all the exciting research going on as well as the warm-hearted and open-minded individuals helping push medicine forward in the 21st century…in addition to the blue painted faces of bagpiping Scots roaming the highlands.
Special thanks to Dr. Tilo Kunath and Julie Gordon for helping me arrange this trip.
Click below to view the rest of this series.
Again, FANTASTIC and “easy” for “regular old people” like me to read and understand. I also LOVED the TedTalk about the brain repairing itself. Seems completely reasonable and rational to me albeit complicated to effect, for now.
I am increasingly fascinated by the advancements in England and Scotland versus what seems to me to be plodding in the US. What resonates with me most is the promotion of patient engagement in the research and treatment. My husband and I are “active participants” in our lives, not passive observers, which means we aren’t inclined to rely solely on Medical Practitioners’ opinions and recommendations and we seek these out “only” from practitioners who are open-minded about patient engagement and collaborative decision making. Harder to find than say.
My husband will be 58 this September so he is not YOPD but he is also NOT 78 or 88. Question for you, what would you recommend “middle-aged” people like us do to “excite” our U.S. medical advisors to not only engage our “age-group” more, but actually reach out to us to help advance the treatment and cure? Although I am not devoid of altruism, my primary goal is very selfish, I want to slow the progression of PD in my husband’s brain!
All the best to you and in your continued journeys. Thank you more than I have the words to convey for sharing your amazing insights and perspectives.
Patient engagement in basic research and clinical trials is definitely something that I wish we had more of in North America. I’m thinking of ways to try and bring some of the things I have seen to NA. One relatively straight forward way would be for some organization to give some kind of award or financial incentive for researchers who try to involve patients. Maybe it exists? If not maybe this is something we could get MJFF or the NPF to consider?
Or, rather than waiting for some other group to do it, we do it ourselves by starting an organization specifically to promote more patient engagement in research.
But to start I’d say look around at research labs in your area, contact as many of them as you can, explain who you are, and just ask to see what they are doing. You might be surprised how many scientists there are that are eager to talk to people about what they do. Not all of them will be willing, some won’t even reply to you, but some will.
Thank you, excellent suggestions. I will look around for what I can find. Since we live about 2 hours from any “major” cities, I doubt there will be lots nearby but that’s ok, it’s just hard to participate in something “daily” if it involves a 4 hour round trip commute.
I’m all for “not waiting” for someone else to do something but I have no experience in starting organizations, and while I’m still teaching school I can’t commit extended time to it except in summer. Nonetheless, you’ve piqued my interest.
A group that seems to me to be under-served in research but very “available” and unfortunately growing in number, are the “50 – 70” year olds, newly diagnosed with idiopathic PD and “typical” symptoms. There seem to be many “support groups” for these folks, but not everyone is drawn to “support groups” and I’m not sure how much science/research gets involved or studies them “seriously” as the group doesn’t immediately come to mind as able to provide “new” information.
Often our group of folks also has other symptoms of “advanced cell age” (i.e. getting older), that might or might not be related to or exacerbated by PD. And our society in general seems more inclined to accept/expect less from the last third of life especially when PD increases apathy. I really want to “fight” any kind of complacency but I’m sensitive to the fine line balance between gracefully accepting reality and expecting to achieve whatever we desire with focus and hard work.
Anyhow, I digress. Thank you for listening and for your continued blogging. You are a researcher and writer I look forward to following for many years.
Sent from my Samsung Galaxy smartphone.
very interesting and very nicely written