Autism BrainNet relies on the teamwork of many clinical and research staff to acquire and distribute the tissue provided by our donor families. This staff is located at three centers, or nodes, across the United States. We recently spoke with Alicja Omanska, tissue coordinator of Autism BrainNet Sacramento node, to learn more about her role and experience working for Autism BrainNet.
By Lilliam Acosta-Sanchez and Serena Bianchi
The interview has been edited for clarity and brevity.
How did you become interested in autism research and involved with Autism BrainNet?
When I started, which was over 20 years ago, autism spectrum disorder wasn’t a mainstream subject. There isn’t anyone on the spectrum in my family, so autism wasn’t a topic that I was very familiar with. In college, I majored in genetics, and after graduating, I went to work directly in the lab of David Amaral, who is now Autism BrainNet’s scientific director. It was a shock to learn how many individuals are affected by autism, and the fact that there really isn’t a definite cause or a reliable treatment.
As a geneticist, I like solving puzzles, and this became a puzzle to me. Moving forward many years, I was working with Cynthia Schumann, director of Autism BrainNet Sacramento node, as her lab manager. Schumann saw the need for brain tissue for autism research and established a brain bank called BEARS, which is the Brain Endowment for Autism Research Sciences. Our research was extremely limited due to the fact that there weren’t many cases available to study. When Autism BrainNet was created, I felt that it would be a wonderful way to help the research community investigate the causes of autism and explore potential avenues for treatments.
Autism BrainNet has come a long way. We have over 200 brains in our program, but we certainly need more. As you mention it, donations are important to help the research community learn more about autism.
It is challenging to procure a brain of an individual with autism because of the age group. As donors are often young, it is tough to approach a family who may not be thinking about brain donation at such a difficult time. Compared to other conditions, such as Alzheimer’s disease, which is in most cases a disorder of the elderly, it is very difficult to obtain donations from a younger age group, especially in cases of sudden and unexpected death.
What is your role for Autism BrainNet?
I’m the tissue coordinator for the Autism BrainNet Sacramento node. My responsibility is to manage the donation process, from the time we get a notification about a potential donor to receiving and processing the donation in our lab. I also make sure that tissue is properly maintained, stored, logged into the database, and appropriately distributed for research studies requests. As our protocols are continuously adapting to meet our research needs. I also troubleshoot new procedures and design custom equipment.
You worked with Schumann as her lab manager and you’ve been in this line of work for a long time. You’re also a geneticist. What do you see as one of the biggest findings in the field of autism research?
What amazes me is how incredibly diverse the classification of this condition has become over the last 20 years. As a scientist and a mother, I wonder about additional risk factors that are continuously attributed: Is it a genetic predisposition, is there an environmental component, or is it a combination of both? Even though progress has been made toward understanding the causes of autism, there is still much to learn about this condition and its different manifestations.
Why is it important to conduct studies of the postmortem human brain to advance autism research?
Autism is a condition that affects the brain, so we must have something to study it on. Without postmortem brain tissue, we wouldn’t be able to do the type of studies that might lead towards figuring out the underlying causes and mechanisms. There are studies of the brain in living individuals (e.g., studies using magnetic resonance imaging [MRI] techniques) that can examine, for example, how different parts of the brain change as we grow up, but these studies would not allow researchers to look into the structure of neurons and see how neurons are connected and how they function. For that we need to have brain samples.
What has been the most rewarding aspect of your collaboration with Autism BrainNet?
I think the most rewarding part is knowing that I can make a difference in somebody’s life. When you have a child, you want what’s best for them, and when they are sick, you feel absolutely helpless. I hope that the type of research that Autism BrainNet promotes will aid in establishing treatments and improving lives of individuals.
How do you see the role of postmortem brain tissue in moving autism research forward?
We need to know why and how this condition is happening. There are many factors that act together, and this makes it a lot more difficult to study. This is why it is important that we’ll keep on acquiring donations and that researchers become interested in brain tissue studies. Autism is a complex condition and different researchers may just be able to chip away at it by having this resource available.