From September 2019 to May 2021, I worked as a science writer for the Waisman Center, a research facility on the University of Wisconsin-Madison medical campus that focuses on the study of neurodegenerative and developmental disabilities. Life on this job was an endless exploration of medicine and biology that I often had little experience in, but that provided an excellent example of why I got into science writing: the chance to jump into topics previously unknown to me and share my findings with others. Much of my job was trying to understand rare disorders through the people who have them. It was challenging in all the right ways and the fact that I could use my writing to help people with disabilities was very meaningful to me.
The following are some examples of my work at the Waisman Center:
Getting to know Andre Sousa for this story was a great example of the virtually infinite amount of scientific niches that exist. His work since somewhere at an intersection of neurobiology, evolutionary biology, anthropology, and developmental biology. I admire this impulse to carve his own way. He said that one of his major challenges in grad school was simply liking too many things. That certainly resonated with me.
I unfortunately did not see this project to its fruition as I was, at this point, wrapping up my time at the Waisman Center, but I did do the majority of the reporting here. It’s sometimes easy to write off symptoms of psychiatric disorders unless you can see the physical impairments behind them. And while you can’t see the mechanisms behind schizophrenia with the naked eye, Xinyu has brought us one step closer to understanding them.
Luigi Puglielli’s work is highly technical. I’d tried writing about what he does previously, but by the time I’d get it right, the publication was no longer very timely and the story would get scrapped. Getting this story correct so quickly was a great way to end my time at the Waisman Center.
Marsha Mailick, one of this study’s leads, described this paper as “meeting of the minds of many, many different disciplinary points of view” and I have to agree. It’s a great example of how modern technology can be used to in the clinical setting to get families the care they need in the most efficient way possible. And quite frankly, it was just a fascinating joy to write.
When the COVID-19 pandemic hit the U.S. in March of the previous year, much of the country’s workforce entered a new work-from-home environment. For researchers at the Waisman Center who often depend on seeing participants in person, this meant exploring a whole new realm for online science and rigorous testing to determine whether remote research was, in fact, possible when it comes to neurodegenerative and developmental disorders.
Rose Cutting is a perfect interviewee. She’s humble, candid, and she has such an incredible passion for what she does that I struggled to narrow down the amount of her quotes that I used in this story! Cutting saw a need for autism-related resources in rural southwestern Wisconsin and she filled that need by founding a non-profit that transformed the way her small community discusses children’s mental and developmental health.
Increasing accessibility: telehealth brings unexpected benefits
(Nov. 30, 2020)
Although the pandemic has had a remarkably negative impact in many health environments, the Waisman Center Medical Genetic Clinic made a surprising discovery in June 2020: their no-show/late cancellation rates dropped a full 12 percentage points from that time the previous year! Telehealth has increased the accessibility of important therapy appointments for many families and, although there is still much to be desired by some in the new format of health visits, there are benefits that simply cannot be ignored by those who might otherwise miss out on the access.
Remembering Ludell Swenson
(Oct. 23, 2020)
This story was like a dream to write. I had gotten word from the Waisman communication aids clinic that their very first patient had sadly died and they hoped I’d do an obituary. Immediately as I started working on this, I became engrossed in the life of Ludell Swenson. He had cerebral palsy and was a fierce advocate for people with disabilities. Each person I spoke to had mentioned just how very outspoken and what a force he was. In writing this — and never having heard his name before — I almost started to regret never meeting him.
The sound beneath the waves
(Oct. 13, 2020)
I hadn’t done any audiological stories before, so this was really exciting for me to learn about. I love when the researcher I’m interviewing has such an obvious passion for the subject that they give me more information than I really know what to do with. It makes my job so much easier! Ela represents this type of researcher. I sent off a couple of questions to her and she got back to me within the hour with answers that explained her research perfectly and gave me exactly the context I needed to fully understand her research paper.
“Research has shown voluntary running is an activity most commonly associated with the reversal of negative impacts of aging and neurodegeneration, but little is understood about why that is.” In this research paper, the authors explore the importance of physical activity on a single gene that aids in cognitive health. The discovery could potentially lead to treatments for people with neurodegenerative or cognitive diseases.
At a time when biopharmaceutical companies are running at breakneck speeds to produce a vaccine for COVID-19, I consider myself very lucky that I get to be a small part of getting the information out there on at least two companies’ efforts to see that that goal is accomplished.
The ECHO effect
(July 28, 2020)
Access to proper healthcare procedures can be a challenge in states like Wisconsin where so much of the state is so rural. But a new program called ECHO seeks to bridge the gaps that exist by virtually training healthcare professionals to better serve their community. Waisman recently adopted the ECHO model for healthcare training.
Balancing act: what motor function can tell us about autism
(June 15, 2020)
When disease research is combined with machine learning to recognize patterns, really amazing things can happen. In this story, one of our autism investigators wrote a research paper for which she used her Wii balance board to discover some unique motor patterns in individuals with autism.
According to a recent report by the Centers for Disease Control, one in every 54 children in the U.S. is diagnosed with autism. In Wisconsin, the rate is 1 in 60.
The social brain: a beautiful mind
(May 6, 2020)
Sibling studies are important for genetics research because two people who are so similar genetically may provide important insights into why one does or does not inherit a disease. In this piece, a literature review of research on the social brain in young siblings with autism pulls together all of the research on that topic from the previous year and a half into one concise roadmap.
Improved technique illuminates Fragile X protein
(Apr. 9, 2020)
This story is a good example of some of the more complex microbiological studies I’ve had to learn enough about to write intelligibly for a wider audience. Fragile X syndrome is the leading inherited cause of intellectual and developmental disabilities and lack of a single protein in the brain contributes to the more common symptoms. Here, researchers seek to understand more about that protein.
Routine test reveals rare diseases
(Feb. 26, 2020)
Feb. 29 is Rare Disease Day and the communications team wanted to do a story that could raise awareness and still encompass multiple rare diseases. The Wisconsin Newborn Screening Laboratory, which screens for 46 rare diseases, seemed like an excellent fit.
It’s important to note that no scientific work exists in a vacuum. I firmly believe that scientists are providing a public service and their work should be used to enhance community engagement. This story was a delight to work on and is an example of programs that bridge the gap between science and the community.
Whole exome sequencing illuminates genetic condition
(Oct. 18, 2019)
This was a fun one to write. The man pictured had a rare genetic disorder that suddenly left him nearly blind later in life. After years of battling this undiagnosed condition, a trip to a geneticist changed everything. Now able to see, he is one of the most thankful and happy people I’ve ever interviewed.
CMT advocate will not be sidelined
(Sept. 23, 2019)
This is my first story to go live for my job as a science writer for the Waisman Center. It’s about a woman with a rare neurodegenerative disease called CMT and one of our researchers here who is doing a lot of work to understand it’s mechanisms.
*Mason Muerhoff contributed to this story.