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. Over the next few months, we will continue to highlight each fellow, their dedication and unique contributions to ALS research, as well as their interests outside of the lab.

We talked with Dr. Marion Sommers-Spijkerman, postdoctoral fellow from the Netherlands, to learn more about her research focused on developing and evaluating a guided web-based self-compassion intervention aimed at reducing self-stigma in people living with ALS and their primary caregivers.

Can you briefly describe your academic background?
I obtained my bachelor’s and master’s degrees in health sciences from Wageningen University (The Netherlands). In 2018, I received my PhD in Psychology from the University of Twente (The Netherlands). My current research builds upon my PhD research on mental health outcomes and change processes in compassion focused therapy and my previous postdoc research on supporting families living with MND/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?
It is crucial that efforts are made to slow progression and develop effective treatments for ALS. However, as long as there is no cure for ALS, it is just as important to pay attention to how we can optimize quality of life among people with ALS and their families. After all, what matters most is quality of life, especially when quantity of life is limited as is the case with ALS. With my project, I aim to contribute towards improving quality of life in people living with ALS and their family caregivers through delivering a psychological intervention, based on self-compassion and aimed at reducing self-stigma.

What are the goals of your funded research project?
As ALS progresses, it takes a large toll on the quality of life of ALS patients and their families through experiences of, among others, stigma. Stigma may result in social isolation, psychological distress and diminished quality of life. With my funded research project, I aim to develop and test the preliminary effectiveness and feasibility/acceptability of a web-based compassion intervention aimed at reducing self-stigma in ALS patients and their family caregivers.

Why did you decide to study ALS over other diseases?
Throughout my studies, I have developed a strong affinity for developing and testing psychological interventions aimed at improving quality of life in vulnerable populations, with a particular interest in people with chronic/life-limiting illnesses. While working as an assistant professor at the Department of Psychology Health and Technology at the University of Twente, a job in the field of ALS crossed my path. I was immediately drawn to this job and still am.

What do you like about working in the ALS research field?
I really like that I can do something meaningful for the ALS community. Where we may teach ALS patients and their caregivers how to cope with stigma and how to improve their quality of life, I recognize we can also learn so much from them. In the past year, I have interviewed many people suffering from ALS, their spouses and children. Their stories were very insightful, touching and above all inspiring. It was amazing to see how resilient most of these families are.

How might your work impact the ALS community?
Self-compassion shows promise as a tool for mitigating the impact of stigma on quality of life, yet self-compassion interventions targeted at ALS are lacking. This project will deliver a web-based self-compassion intervention aimed at reducing stigma in Dutch families living with ALS. This intervention is expected to be a valuable addition to the regular care for ALS in which emphasis is on dealing with symptoms and functional limitations. A community-based participatory research approach will be adopted so as to assure that the intervention is driven by, and meets the needs of, ALS patients and their caregivers. Provided that the intervention yields positive outcomes in the future, the intervention may be adapted to other cultures/countries.

Where can people get more details about your research project?
Are you interested in my project and would you like to receive more information? Please send me an email at m.p.j.spijkerman-6@umcutrecht.nl.

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?
I am relatively new to the field of ALS, yet I have noticed that there are so many developments all over the world. That gives me hope that someday scientists will find a cure for ALS.

What do you like to do when you aren’t in the lab?
When I am not working, I love to spend time with my family and friends, especially my 3-year-old daughter. Furthermore, I greatly enjoy baking all kinds of cakes, cookies and desserts, making beautiful hikes, boot camping, travelling and exploring new places. Finally, I have a passion for interior design.

Is there anything else you’d like to add?
I would like to thank The ALS Association for making my research possible. I am excited to work on this project, and to create an intervention that hopefully will make a difference in terms of quality of life among ALS patients and their family caregivers.

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.