blog

I’m on the edge of the 3m springboard, standing nearly 10 feet above the surface of the water. I’m supposed to jump up, grab my knees, and then rotate backwards to enter the water, hands first, straight up and down. This is a back dive tuck, or 201c. I’ve been practicing it for three weeks, but my coaches have turned on the “bubbler,” which gives a bit of a cushion to hitting the water while you’re learning. This is my first attempt without bubbles.

I coach new divers, kids learning to dive, but there’s something different about being a grown-up learning a new sport. We talk a lot about ‘lead-up skills’ that prepare you for the next skill. We talk about trust in your coach, that they know when you’re ready for the next thing. I trust my coaches but I also know that I’m not invincible. I’m not a superhero. I dislocated my elbow on the trampoline last year doing a skill I’d done for 10 years. Things hurt differently in your 30s. Smacking – what they call it when you hit the water flat on your back or your front – hurts differently in your 30s.

Learning a new sport as a grown-up means being surrounded by kids who can do it better. I don’t know if the 201c terrifies them still, but they can do it with grace and precision. I’m just trying not to die. (Not literally, but it does feel like a possibility…)

I’ve felt the panic for this dive for a while. Whenever I think about it without the bubbler, my heart starts beating faster. My coaches don’t think I need bubbles, but the anxiety in my chest speaks louder than my trust in them. I decide to watch videos – first my own 201c attempts (with bubbles) and then a bunch of videos I find on the internet. I’m learning to visualize the “perfect” dive. I probably spend an hour watching a dive, closing my eyes, and visualizing myself doing the exact same thing.

I warm up with a few dives from the 1m springboard, a few back fall-ins from 3m, and some backwards straight jumps from 3m to help quell the fear. My friends give me a pep talk — my fellow Masters divers are the only reason I can keep conquering my fears. (There is still a team in an individual sport!) I stand on the board, facing backwards. I know the water is there, without looking back, and take a deep breath. I set my arms in a ‘T’, squeeze my abs and my butt, and swing! Touch my knees, kick out near ~60 degrees, reach my arms back, and hold tight for the entry.

I did the dive!! I feel like I’m on top of the whole world. This dive, which has had the upper hand on my fears for weeks, is now something I can do.

What else is possible??

Three days later I compete (!!) 201c from 3m and get the best scores on a dive I’ve gotten in my 6 months of competing. The fear, the anxiety… it’s all worth it for the adrenaline of trying something new.

Diving is such a thrilling sport. I’m so happy I found it! I’m incredibly privileged to dive and coach with iDive Vancouver. To be clear, I’m still afraid of this dive — but the fear has lessened enough for me to attempt it a little more often!

This text from a friend after the beginning of the new CBS drama, Watson, inspired me to share a little bit of background on the genetic disease in episode 1. When Dr. Watson visits the first patient of the show, she suspects she has FFI, or fatal familial insomnia. This isn’t your typical occasional sleepless night – it’s a rare genetic disease that affects your central nervous system (the brain and spinal cord).

FFI is classified as a prion disease. A prion is a misfolded protein, first described by Dr. Stanley Prusiner in 1982.¹ Prion diseases are unusual in that they can be genetic (as in FFI), sporadic, and infectious. Many people are familiar with “mad cow disease”, or bovine spongiform encephalopathy (BSE), which is a type of prion disease that can be transmitted from cows to humans. You might have also heard of scrapie, a prion disease that affects sheep.

Almost all prions are forms of the major prion protein (PrP) which is made from the PRNP gene. This gene is highly conserved in mammals, which suggests that it has an important function – but scientists aren’t quite sure what that function is! The effects of prion disease on the nervous system suggest that it’s most important roles might be in the brain, but it probably plays a role in the immune system and in other cells of the body.

Proteins have to be folded correctly, like a piece of origami, to function properly. When proteins are incorrectly folded, they are usually degraded within the cell. In prion disease, a misfolded prion protein is present and isn’t degraded. This misfolded prion causes properly folded prions to change their shape – a bit like scrunching up a carefully folded origami figure. These scrunched up, or misfolded, prions build up in regions of the brain and destroy nerve cells.

Infectious prion diseases, like BSE, are transmitted when someone is exposed to brain or nervous system tissue, typically by ingesting animal products that contain the misfolded prion. The prion is not destroyed by heat, so typical food processing doesn’t destroy it. Canada is considered a country at negligible risk for BSE, so it’s not a major concern here.² Some cultures which practiced ritualistic cannibalism have also shown transmission of prion diseases – this is known as kuru and is virtually extinct.³

FFI and other genetic prion diseases, such as Creutzfeldt-Jakob disease, are not caused by ingestion of a misfolded prion protein but rather by the mutation of the PRNP gene. FFI is linked to a single change in the PRNP gene, D178N.⁴ This indicates that the aspartic acid (D) in the protein at position 178 is replaced with an asparagine (N). These amino acids are building blocks of protein and some changes will affect the way the protein folds. This D178N mutation causes misfolding of the prion protein and results in degeneration of the brain. FFI is considered a ’dominant’ disorder because only one copy of the mutated gene is necessary to cause disease. This means there is typically a family history of FFI – if not, the mutation may have arisen spontaneously (called de novo). There is no cure for FFI to date and treatment focuses on managing symptoms.

A recent (2024) study from MIT developed a method called CHARM (Coupled Histone tail for Autoinhibition Release of Methyltransferase) which shows great promise for treating genetic prion diseases.⁵ This method uses DNA methylation to silence, or ‘turn off’ PrP expression. While research shows that about 50% reduction in PrP is necessary for a therapeutic effect,⁶ this study achieved 80% reduction in PrP. This study was performed in mice, so there is a lot of follow-up work to be done before it can benefit humans with prion diseases.

For more on the human experience of prion diseases, I encourage you to read Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science that Rescued Them (2017). This is a powerful nonfiction account of the Baxley family uncovering the Gerstmann-Straussler-Scheinker prion disease affecting their family tree, written by New York Times science reporter, Gina Kolata.

** SPOILER ALERT ** It turns out that Dr. Watson’s patient doesn’t have FFI, and her diagnosis will be our next blog post!

1.         Prusiner SB. Novel Proteinaceous Infectious Particles Cause Scrapie. Science. 1982;216(4542):136–144.

2.         Canadian Food Inspection Agency. Minister Bibeau welcomes recognition that Canada is negligible risk for BSE. 2021; press release accessed February 4, 2025.

3.         Liberski PP, Sikorska B, Lindenbaum S, et al. Kuru: Genes, Cannibals and Neuropathology. J. Neuropathol. Exp. Neurol. 2012;71(2):92–103.

4.         Cortelli, Gambetti, Montagna, Lugaresi. Fatal familial insomnia: clinical features and molecular genetics. J. Sleep Res. 1999;8(S1):23–29.

5.         Neumann EN, Bertozzi TM, Wu E, et al. Brainwide silencing of prion protein by AAV-mediated delivery of an engineered compact epigenetic editor. Science. 2024;384(6703):ado7082.

6.         Minikel EV, Zhao HT, Le J, et al. Prion protein lowering is a disease-modifying therapy across prion disease stages, strains and endpoints. Nucleic Acids Res. 2020;48(19):10615–10631.

I wrote my first lay summary after 11 months as a graduate student and the only experience I had communicating my work to non-scientific audiences was talking with my family. I’ve learned a lot since then as a writer, reader, and reviewer of lay summaries, as well as through my non-profit and science communication work.

Why are lay summaries important?

Stats Canada reports that in 2016, approximately two-thirds of adults, aged 25-64, have completed postsecondary education, which includes trades, apprenticeships, college, and bachelor’s level education. Of those, STEM comprises the major field of study for about one-quarter. In all, this means that the vast majority of people living in Canada have, at most, a high-school level education in science.

A significant amount of research is funded by the public, through government funding or through donations to charitable and non-profit organizations. One of the most important obligations of governments as well as non-profit organizations is to justify the dollars spent. When it comes to research, this is particularly challenging as many projects are funded based on potential – how we think research projects can affect people, the planet, or society. (As a health researcher, I am biased towards research that helps people, so my examples are all skewed towards biomedical.)

Justification occurs when reports are submitted – to Ministers, to staff, to Boards of Directors, or to other senior members. These reports often include summaries of the research funded. While these people are typically highly qualified for their positions, they don’t often have scientific backgrounds. For many of them, the last required science class they took was in grade 10, which could be many years ago.

How do you convince people who haven’t taken science since grade 10, that your work is important, essential, and worth the investment? Enter the lay summary.

What is a lay summary?

A lay summary is a concise summation of your work that is accessible to the general public. I’ve avoid using ‘abstract’ in the definition because I’ve seen a lot of scientists use it as an excuse to just copy whatever they’ve written as a scientific abstract into the ‘lay abstract’ box. There are a lot of differences! I know that writing a scientific abstract is already challenging, and here are funding bodies giving us all an even greater challenge.

Let’s start with a couple of challenges:

Challenge #1: Can you explain a hard idea using only the one thousand most used words? UP-GOER5 was developed by Theo Sanderson and is a huge challenge. Try just one scientific word or phrase from your research proposal… (https://splasho.com/upgoer5/. Your lay summary can use more complex words than this, but it’s a good way to ballpark what needs to change.

Challenge #2: Have you evaluated your document’s readability and reading level? I’d recommend trying this on a draft scientific abstract or lay summary. Microsoft Word has a great tool for this. https://support.microsoft.com/en-us/office/get-your-document-s-readability-and-level-statistics-85b4969e-e80a-4777-8dd3-f7fc3c8b3fd2

Some of the things you’ll have noticed is that complex words are pretty uncommon and increase the reading level. Complex sentences can be even more difficult to understand. What else did you notice? Feel free to share in the comments.

I’ve written a bunch of lay abstracts, read even more, and reviewed a number of them attached to research proposals. My opinion on writing them is my own: it might not be what your supervisor or your peers feel is best. Remember that you, me, our collective peers, and supervisors are mostly all scientists  – the best feedback on a lay summary comes from a non-scientific audience.

Eight tips for your lay summary – the nitty gritty

1. The people reading your lay summary are most likely not experts in your specific field. Don’t use jargon. ‘Highly fragmented’ can be ‘very short’ and still get the concept across.
2. Focus on the impact to people, planet, or society – things that a grade 10 student can understand. “Identifying patients with a specific type of lung cancer who will benefit from a different type of therapy” is better than “Using a probabilistic model to determine which individuals with non-small-cell lung adenocarcinoma would benefit from X chemotherapeutic regimen over Y”. (Not picking on lung cancer researchers here, I promise!)
3. If you’ve read a newspaper article (online, or in print) you’ll see that the first sentence is designed to grab your attention and entice you to keep reading – that’s called a lede. I suggest you use one! As scientists, we often think linearly from background to problem to hypothesis, but most non-experts will stop reading if it’s not immediately interesting. (When was the last time you read a journal article that wasn’t related to something you’re already curious about?) “This research will change the way we think about chemotherapy for patients with breast cancer,” is going to grab more attention than, “Breast cancer is a serious disease affecting 1 in X Canadians every year.”
4. Your research is way more complicated than you can describe in a lay summary. For example, I’m looking at non-coding mutations that affect the splicing of a specific gene in a specific subtype of non-Hodgkin lymphoma, but I’ve summarized that as “investigate how this affects the behaviour of mantle cell lymphoma and other types of non-Hodgkin lymphoma”.
5. LIMIT YOUR ABBREVIATIONS. I can’t say this enough. It’s hard enough as an expert to read a sentence in which every second word is an abbreviation that was introduced a paragraph ago or even earlier. (I bet you know what I mean!) Now imagine being a non-expert: “how G-to-A mutations in HNRNPH1 affect MYC expression in MCL, a type of NHL,” becomes almost impossible to decipher. (Also note that this is just an example, and not an actual experimental goal.) Common abbreviations are totall OK. Something like ‘DNA’ is reasonable to include, but ‘RNA’ is not as well known. If you need to use abbreviations to fit within the word count, see #6 and #7!
6. Less detail is almost always better. The average person doesn’t need to know each of the specific objectives or aims of your research. Keep it simple: what are you trying to accomplish? What are you going to do? Something like ChIP is already too detailed – what’s the very basic question you’re trying to answer? How will people know when you’ve succeeded? cfme-DIP-seq might be the most cutting-edge technique in your project, but it’s a lot to understand even for an educated biological expert studying a slightly different topic.
7. Following from #5 and #6, limit new terms or concepts to just one. In my most recent lay summary, I introduced mutations: “…these arise from errors, known as mutations, in the DNA of a cell,” and then went on to describe that, “these errors provide cells with incorrect or incomplete instructions…” This is accurate, although imprecise, but it was the one concept necessary to understand the rest of my lay summary. Maybe your one concept is a specific gene that carries out an important function… or a specialized technique that will give us new information on a topic you’re researching.
8. Take out any passive language. A hint to figure out if it’s passive: can you add “by aliens” to the end? “The size of tumors will be measured,” Is a passive phrase (you can add, ‘by aliens,’ to the end and it still makes sense – except for the aliens of course). Try “I will measure the size of the tumors.” (For example only, because this doesn’t provide any meaning to the size of tumors.)

I hope these tips have given you a framework for writing and editing your lay summary. The best editor is still going to be someone who hasn’t taken a science class since they were in high school! I’m not promising you success, but I am promising you a summary that is easier for the general public to read than your scientific abstract.

Please pass on your suggestions and comments below!

“I work 80 hours a week, therefore you must also work this long to be successful.” Spoiler alert: if your expectation is that we all work 80 hours/week – I will fail to meet expectations.

This attitude is everywhere in academia: from the evolving nature of ‘scholarship’ to outright shaming those who don’t put in face-time every weekend and holiday. As a student, it’s demoralizing to hear and read these conversations all the time. Whether it’s on Twitter, overheard in the hallway, or talking about the ‘culture of busy’ with colleagues, the singular definition of success as an exclusive commitment to your work is harmful.

Why do I pursue interests outside of the lab?

1. Graduate programs in the sciences are notoriously terrible at teaching students to communicate science appropriately and effectively.  
   Delivering science programming to kids as a volunteer with Girl Guides of Canada, and developing social media content with the Beatrice Hunter Cancer Research Institute has helped me learn to relate to different attitudes and perspectives on science. These are not academic pursuits, but they certainly help my training as a Ph.D. scientist.
2. Graduate school provides little-to-no training on key management skills.
   These include human resources and people management, budgeting, as well as risk identification and mitigation, to name a few. But – principal investigators are expected to hire, direct, and evaluate students and staff, to manage budgets (of more money than I have ever seen), and to manage concrete and strategic risks… while directing a strong research program. Volunteers not only get insight into the operations of local, national, and international organizations, but often receive training on many of the management skills that are necessary to run research projects and collaborative teams.
3. I am a human being. An 80-hour workweek leaves very little time to be human. In order to take care of myself – including my mind, my heart, and my motivation – I have to set aside time to turn off the screen, put away my papers, and chill out. Believe me, I notice when I don’t. My health concerns are minor, so I can only imagine how challenging it is for my colleagues who set aside many more hours to protect their health. I also only have to look out for myself (& my cat). Expectations of an 80-hour work week are impossible for many people, especially those with chronic health conditions or with substantive care-giving responsibilities. (For more on these topics, here’s a great post by Raul Pacheco-Vega, and a piece in Times Higher Education.)
4. I believe innovation does not take place within a vacuum. Gravity wasn’t discovered at the lab bench. Fluid displacement wasn’t discovered at the lab bench. We find new ways of doing things, of thinking about science, of talking about science, when we interact with the world around us. Connecting with kids, hearing from community activists, advocating for policy change, raising money for research alongside friends and neighbours… these all impact the way I see the world.

Which innovators are we turning away from science when, even in jest, we talk about working eighty hours per week? What skills are we devaluing when we expect students to commit to graduate school to the exclusion of everything else? Knowing that most science graduate programs still consider everything outside academic research as an “alternate career”, how do we respect personal and professional development for the broad range of possible careers when we ask (again, even in jest) for 80 hours/week?

When I started graduate school, I used to joke that I had sold my soul to science. A few years later, I have realized that I owe it to myself to make sure science doesn’t take my soul. That doesn’t mean I am any less dedicated, any less successful, or any less of a scientist. It means that I value what science brings to my life and what my life experience brings to science.

… and why it took me years to decide to do it!

When I was 7 or 8, my mom moved to Calgary to start a new job. My dad, sister, and I moved from Manitoba to join her over the course of a few months, but my mom lived in a new city without us. Every once in a while, she would talk about going out to a movie – by herself!

This seemed like such a foreign concept to me as a kid, a teenager, and even in my early 20s. Why would she go see a movie by herself? If I’m honest, I thought it was lame. I lived in new city after new city and didn’t see a lot of movies because I wasn’t going to go by myself. Until this year, in Halifax.

Here’s what I learned:

• There are lots of other people going to movies alone! They’re not lame – so neither am I.
• You don’t have to consider anyone else’s preferences in your movie choice (key if you have eclectic choices…).
• You get to experience the movie through your own lens – without reactions from your friends/family/partner.
• Perhaps most importantly: you don’t have to share your popcorn with anyone.

My new favorite self-date is taking myself to the movies! Have you tried it?

1. I have lived in 5 Canadian provinces (BC, AB, MB, ON, NS).
2. I studied Microbiology & Immunology because I read Richard Preston’s The Hot Zone in grade 7 and wanted to know more about Ebola.
3. I used to write letters about current events to the Mayor, the Premier, and the Prime Minister.
4. I was in marching bands for 5 years and still wear my red cowboy boots in July.
5. I know how to play (in order of proficiency) the flute, piccolo, oboe, french horn, and trumpet.
6. My cat has her own Instagram account.
7. I’ve been to more weddings of strangers than of people I know – my grandfather was a Hindu pundit.
8. I am a certified cheerleading coach.
9. I hate the sound of snow under my feet.
10. I’d rather be camping.