The ALS Association has pledged to do whatever it takes to make ALS a livable disease, which means longer lives for people living with ALS, greater quality of life for people living with the disease and ultimately the prevention of ALS altogether. Researchers like our 2020 Milton Safenowitz Postdoctoral Fellowship Program recipients are playing an important role in helping to make this happen.

The  Milton Safenowitz Postdoctoral Fellowship Program continues to support young scientists and is the only program of its kind specifically funding early ALS postdoctoral fellows eagerly searching for a cure. Founded in memory of Mr. Safenowitz by the Safenowitz family through The ALS Association Greater New York Chapter, this unique program encourages young scientists to enter and, importantly, to remain in the ALS field.

More than 75% of the postdoctoral fellows the Association funds go on to start their own labs to continue studying ALS and mentor other young ALS researchers. The rest of the Safenowitz fellowship program graduates typically go on to careers in the biomedical industry, nonprofits, and medical writing, with many still staying in the ALS space.

This year, we were proud to support eight new postdoctoral fellows out of a highly competitive applicant pool, two of which were made possible through funds provided by The ALS Association Oregon and SW Washington Chapter. We are excited to highlight each of them on our blog, their dedication and unique contributions to ALS research, as well as their interests outside of the lab.

We talked with Dr. Caroline McHutchison, postdoctoral fellow from the University of Edinburgh, to learn more about her research focused on examining the presence, onset, and evolution of cognitive and behavioral symptoms, relative to motor symptom onset and diagnosis of ALS.

Can you briefly describe your academic background?
I have always been interested in impairment in thinking skills (cognition) and behavior in neurodegenerative disease, particularly in identifying those who are most at risk of developing these symptoms. After completing a Bachelor of Science in Psychology and master’s in human cognitive neuropsychology, I went on to complete my Ph.D. at the University of Edinburgh, UK. I was supervised by professors Sharon Abrahams and Andrew McIntosh and we collaborated with Professor Orla Hardiman and her team at Trinity College Dublin, Ireland, to explore whether cognitive and behavior features in people with ALS related to personal and family symptoms of psychiatric disorders. Throughout my Ph.D. I also worked as a research assistant on a project which examined long-term cognitive functioning following stroke. My most recent work as part of my first research fellowship, explored how cognition and behavior changes over time in ALS.

It is said that every 90 minutes, someone is diagnosed with ALS and every 90 minutes someone dies from the disease. Time is not on the side of those who are diagnosed, and no matter what issues we are all currently facing in the world, ALS doesn’t stop. What are you doing to address the urgency our ALS community is feeling?
I will be working with a unique dataset from the Pre-symptomatic Familial ALS (Pre-fALS) study, led by Dr. Michael Benatar and Joanne Wuu at the University of Miami. Pre-fALS began in 2007 with the goal of identifying biomarkers of pre-symptomatic ALS and preparing for disease prevention trials. The study entails characterizing the earliest signs and symptoms of the disease in individuals who are at genetic risk for ALS. Since 2011, longitudinal cognitive and behavioral assessments have also been added to the study, resulting in a wealth of information. We are now bringing together expertise in neuromuscular disease, and cognition and behavior in this collaborative project to examine this unique dataset.

What are the goals of your funded research project?
Our understanding of cognitive and behavioral symptoms in ALS has moved in leaps and bounds in recent years. We now know that these symptoms are common and are reported in up to 50% of people with ALS. However, more research is needed to better understand when these symptoms first begin and how they develop. My project is a collaboration between the Universities of Edinburgh and Miami. It aims to examine the presence, onset, and evolution of cognitive and behavioral symptoms, relative to motor symptom onset and diagnosis of ALS. We will be studying individuals who carry certain genetic mutations which put them at increased risk of ALS but show no clinical signs of the disease when they enrolled in Pre-fALS. We are also interested in whether people with ALS who have a personal and/or their family history of psychiatric disorders are more likely to experience cognitive and behavioral symptoms.

Why did you decide to study ALS over other diseases?
I have always been struck by how many people know someone who has been affected by this disease. During my Ph.D. I travelled across Scotland visiting people with ALS and their family members to collect data as part of my study. Cognitive and behavioral symptoms are distressing both for people with ALS and for their family members, and these symptoms appear to vary greatly between individuals. Hearing people share their personal experiences of the disease and how greatly it has impacted their own and their families lives really motivated me to continue to pursue a career in ALS research. I have also been fortunate enough to work with supervisors and mentors who are experts in their fields in ALS research including professors Sharon Abrahams at the University of Edinburgh and Michael Benatar at the University of Miami. The support and guidance I have received during my career in ALS research has been exceptional and has led to many fantastic opportunities, for which I am very grateful.

What do you like about working in the ALS research field?
Working in ALS research feels like being part of a larger community. Scientists, clinicians, people with ALS and their families all come together, united by the common need to better understand and ultimately fight ALS. There is a genuine passion, interest and desire from researchers to answer important questions and from people with ALS and their family member to participate and engage in research wholeheartedly, making it an incredibly rewarding field to work in.

How might your work impact the ALS community?
Although we know that cognitive and behavioral changes are common in ALS, we don’t know when these symptoms first develop or who will show these changes. It is possible that these symptoms begin early, even before motor dysfunction. The findings from this project will add to our knowledge of pre-symptomatic ALS accumulated through the Pre-fALS study, and contribute to other research also using biological, brain imaging and physiological data to improve our understanding of the onset of the disease, and how to identify individuals who are most at risk. Ultimately, this would mean that we are able to target individuals for future research to establish interventions to slow, or even prevent, ALS. Finally, the sooner we understand how and when cognitive and behavioral changes develop, the sooner we can provide support for both people with ALS, their family members and their carers in a timely manner.

Where can people get more details about your research project?
More information about the Pre-fALS study can be found here.

It is often said that ALS is one of the most complex diseases to understand. Yet, you go to work every day to tackle the challenges of your research. What gives you hope that there will someday be a world without ALS?
There is so much for us to learn about ALS. There are so many researchers who are working hard on their piece of the puzzle that is ALS. Slowly all these puzzle pieces are coming together. One of the biggest puzzle pieces has been the discovery of the associations between ALS and dementia. Over time these collective efforts will pay off, along with a growing public awareness and interest in supporting research in ALS (for instance the Ice Bucket Challenge). The development of coronavirus vaccines in the past year is a perfect example of how powerful a collective goal is when it comes to tackling disease.

What do you like to do when you aren’t in the lab?
In my free time I love to get outside for a walk or a run. Living in Scotland, there are so many great places to go hillwalking and I am slowly making my way up all the Munros (this is the Scottish term for hills that are over 3000 feet)! When it’s raining (which is often) I enjoy sewing and have recently been attempting some knitting.

Is there anything else you’d like to add?
Our research would not be possible without the continued enthusiasm and dedication of all the people with ALS and their family members who participate in research studies. I also gratefully acknowledge The ALS Association and the Safenowitz family for supporting my research. I look forward to sharing my results and together we can beat ALS!

Stay up to date with the latest ALS research news by subscribing to our monthly newsletter, Research Matters. To learn more about the research we fund, visit als.org HERE.