Audacious Impact: Marta Benedetti Of SFARI On Leading An Audacious, Visionary, Impact-Focused Program
An Interview With Rachel Kline
Believe in your Mission: In our case, we are focused on understanding the brain in autism and to potentially support the development of approaches that can improve the life of those living with autism and their family. This mission is a phenomenal motivator.
In an era where social and environmental challenges are increasingly pressing, certain organizations stand out for their bold and innovative approaches to creating meaningful impact. These trailblazing organizations are not just meeting the status quo but are setting new standards for what can be achieved through dedicated, impact-focused programs. What does it take to pioneer such transformative initiatives, and what can others learn from their successes? I had the pleasure of interviewing Dr. Marta Benedetti.
Marta Benedetti, Dr. Biol. Sciences, is a senior scientist at SFARI (Simons Foundation Autism Research Initiative) and the co-director of Autism BrainNet. Autism BrainNet, a program of the Simons Foundation, is a postmortem brain tissue repository that she helped to launch in 2014. Dr. Benedetti joined the Simons Foundation in 2007 and works with the SFARI team to evaluate and manage the SFARI autism grant portfolio, with particular emphasis on grants in the area of molecular and cellular biology.
Dr. Benedetti earned her degree in biological sciences at the University of Rome, La Sapienza, working on maternal behavior and subsequently on the neurophysiology of the dopaminergic system. Her research first at the University of Rome, Tor Vergata, at the Institute of Neurobiology of the National Research Council and later as a postdoctoral fellow in the laboratory of Moses Chao at Weill Cornell Medical College in New York, focused on the structure, function and signal transduction mechanisms of nerve growth factor receptors. As a postdoctoral fellow in the laboratory of Peter Scheiffele at Columbia University in New York, Benedetti studied the molecular mechanisms of synaptogenesis in the central nervous system. Dr. Benedetti is based in the New York City area.
Thank you so much for doing this with us! Our readers would love to get to know you a bit better. Can you share a bit about your background and what has led you to your current role?
I am an Italian scientist who came to New York City as a postdoc, working in cellular and molecular neurobiology. What was meant to be a short stay to work on my research project in Dr. Chao’s laboratory in New York has turned into 30 years. Science changed the course of my life.
My focus first to understand signal transduction and later synapse formation in the nervous system, was basic in nature, and took place in academic laboratories. I later left academia to move into different research-supporting roles at a variety of disease-oriented not-for-profit organizations. I felt lucky to join SFARI (Simons Foundation Autism Research Initiative) in 2007. Their mission, to accelerate research into the biologic causes of autism, aligned with my interest in studying the brain, while also addressing a highly prevalent human condition and big need in medical research.
What inspired you to start or join your organization, and what is its core mission?
I joined SFARI because the organization provided me with a unique opportunity to use my knowledge towards better understanding a specific condition, autism. I hoped to advance what we know about the mechanisms underlying this disorder that affects many individuals in our society in different ways, with the goal to eventually translate discoveries into approaches that could improve the quality of life of those on the spectrum. And it gave me the opportunity to appreciate and expand my knowledge to different scientific fields, such as genetics and cognitive neuroscience, that have contributed to new knowledge in autism.
The way SFARI has approached autism research is through funding exceptional researchers and projects as well as via the building of resources, datasets, and biospecimens that can be used in studies worldwide to accelerate discovery. Eventually, we came to realize that we needed to prioritize the collection of postmortem brain tissue as this precious resource is the only way to study the brain on the cellular or molecular level. This led to the creation of Autism BrainNet. Working with David G. Amaral, Ph.D, UC Davis Distinguished Professor at the UC Davis MIND Institute and Department of Psychiatry and Behavioral Sciences, who is now the Scientific Director of Autism BrainNet, and Gerald D. Fischbach, M.D., Distinguished Scientist and Fellow, former SFARI Director, we launched a national network to facilitate the collection, storage, and distribution of postmortem brain tissue. Simultaneously, we built a team to work within the autism community and among medical professionals to educate them about the opportunity for brain donation.
Could you tell us about your journey in the industry and any significant experiences that have shaped your approach to impact-focused programs?
Autism presents with a remarkable amount of heterogeneity among individuals. With that in mind, at SFARI, we worked to recruit top notch investigators — whether or not they were working in autism — to tackle diverse aspects of autism. We built large cohorts of patients who provided valuable data and biospecimens to inform genetic and other scientific investigations that continue to expand our understanding of the biology of autism.
Given this heterogeneity among autistic people and those with related neurodevelopmental disorders, our goal at Autism BrainNet is to also collect a wide variety of postmortem brain tissue samples. One of the reasons we created our program was to respond to the demand for tissue that will allow for the highest quality studies of the organ most involved in autism, the brain. We can only understand the cellular and molecular facets of autism by studying brain tissue. Other strategies such as magnetic resonance imaging do not provide the same information.
Can you describe your program’s mission? Does your organization solve societal problems? If so, tell us how. What problems are you solving?
The mission of the Simons Foundation, which began in 1994, is to advance the frontiers of research in mathematics and the basic sciences. The mission of their autism initiative is to advance the basic science of autism and related neurodevelopmental disorders. Hence, Autism BrainNet’s mission is positioned in this context to promote innovative, high-quality research on postmortem brain tissue with the goal of improving the understanding of the biological causes of autism spectrum disorder (ASD) and related neurodevelopmental disorders.
Do you have a big hairy audacious goal for your organization and its impact on the planet?
One of our most important goals is to build a resource that represents the many different presentations of autism, a condition that can be associated with many different social, communication, and behavioral characteristics. We also want our brain bank to be a resource that includes individuals with genetic diagnoses, those with epilepsy, and those with other comorbidities.
This is a big goal because autistic individuals present with a spectrum of abilities. There are those with profound autism, who can’t live their life independently, may require constant adult care and have cognitive ability characterized by low IQ. Others are minimally verbal to non-speaking while others are highly functioning, sometimes with special abilities, plus there is everyone in between. Equally important is that our repository includes both males and females, and individuals from diverse social and diverse backgrounds to represent the entire population.
Can you describe one of the most audacious impact-focused programs your organization has pioneered? What was the inspiration behind it?
The Simons Foundation accelerated basic autism research when they launched The Simons Simplex Collection (SSC), a repository of genetic samples and associated phenotypic data from 2,600 simplex families, each of which has one child affected with an autism spectrum disorder, and unaffected parents and siblings. Research on the SSC led to a much deeper understanding of the genetic architecture of autism and to the launch of Simons Searchlight, a new study cohort that recruited individuals sharing genetic diagnoses associated with autism. More recently SFARI launched SPARK, the largest study of autism, a growing community of autistic individuals — over 100,000 so far — and their families. Autism BrainNet works closely with Simons Searchlight and SPARK to present the importance of postmortem brain donation.
Autism BrainNet collaborates with the autism community and scientists around the world to promote a greater understanding of autism and related neurodevelopmental disorders through the gift of brain donation. We educate the autism community about the opportunity to donate, we support families during the donation process, we store the brain tissue at the Autism BrainNet academic nodes and evaluate requests for postmortem brain tissue, to ensure that each donated brain is being used judiciously for projects that are well designed to advance what we know about autism.
What were the biggest challenges you faced while developing and implementing this program, and how did you overcome them?
The biggest challenge faced by Autism BrainNet is that the community is not familiar with why we need postmortem brain tissue or how to initiate a donation. We’re constantly working to improve and broaden understanding of our program and to normalize the idea of brain donation. Notably, a person can be both an organ donor and a brain donor.
Of course, we understand that it is a delicate and difficult topic to discuss, especially in a condition that starts early in childhood and that usually accompanies individuals through their lifetime. The time to learn about and make plans for brain donation isn’t at the time of crisis — it’s an idea that needs to be considered before the end-of-life is imminent. For families considering brain donation, long-term planning can help minimize the burden of decision-making at the time of death. Autism BrainNet accepts donations from people with a diagnosis of autism, even when other diagnoses are present, from people with a genetic diagnosis associated with autism, whether or not they have a diagnosis of autism, and from neurotypical people younger than 50 years old. To preserve the scientific value of the brain tissue, a donation should be received within 24–48 hours after death.
Another challenge is communicating the results derived from research on tissue. While brain tissue gifted by donors has already led to dozens of published studies, we’re only at the very beginning of collecting results from many ongoing and future studies, from the tissue in Autism BrainNet. We hope that some of this research will inform future treatments approaches to managing the challenges of autism.
But even though research moves slowly, there is a silver lining: Each gifted brain can be used in hundreds of studies for decades because of our state-of-the-art collection and storage facilities. Plus, we’re not just collecting physical and genetic information from our donors. We’re also collecting life and medical histories from their families, that enrich the value of the brain tissue. Hence, a donor’s legacy is truly living on in our brain bank.
Tell us how your program has been received. What struggles have you had generating interest? Please share what successes you’ve had:
Our team at Autism BrainNet includes the clinical team that interfaces with families, the academic nodes that receive, store, and distribute tissue to researchers, and the outreach team that presents the importance of postmortem brain donation to the autism community and to collaborators. We also work with informaticians dedicated to building infrastructures that store and distribute data and collaborate with our colleagues at the Simons Foundation. What brings us all together is a critical and comprehensive dedication to our mission of advancing autism research. When people learn about our program, we find they are supportive of Autism BrainNet
Everyone involved in Autism BrainNet shares immense gratitude to the families who have already given the ultimate gift to research, donating their loved one’s brain to research. Without them, we cannot reach our goals. Their support is the most meaningful endorsement of Autism BrainNet.
How do you measure the success and impact of your programs? Can you share any specific metrics or outcomes?
Note, our program isn’t a traditional business that serves customers. We are building a resource for researchers through the gift of brain tissue. Our program is a very unique project that can be measured in two simple ways: the cohort we are able to assemble and the results that researchers have produced.
To date, we have received about 400 donations, with more than 150 from individuals with autism. Over 150 are from typical individuals or controls, who provide comparisons in research studies. This number, while still low for a condition with the prevalence and heterogeneity of autism, actually represents the largest repository of brain tissue for autism in the world.
Given the resource we are building, we are also very busy evaluating requests from researchers who wish to use the tissue (to make sure it is used for excellent studies) and distributing tissue from our brain bank nodes, accompanied by a wealth of clinical data, to investigators. As awareness of our program and our brain banks grows, we are seeing the results in the form of peer-reviewed papers. We expect to see the results of many more projects in the future and will share those results with the autism community.
How do you ensure that your programs are sustainable and scalable over the long term?
We built Autism BrainNet from scratch 10 years ago. Today, we have an international network, working with four academic centers in the US and Canada who use our protocols to collect, store and process donated brains. We grew our team to meet the needs of an increased number of donations. Our team’s dedication is exemplified by the fact that we are capable of receiving donations 24/7. Most importantly we can count on the commitment of the Simons Foundation, a well-respected, and well-established organization dedicated to improving scientific understanding to support our efforts.
In both 2022 and 2023, Autism BrainNet received 50 donations, nearly 40 percent more than the 36 donations received annually from 2018–2021. Over the past three years, Autism BrainNet approved 46 research studies using postmortem brain tissue and nearly 10 other projects are under review by the program’s Scientific Review Committee. In addition, Autism BrainNet supported research has generated 26 peer-reviewed scientific articles that have shed light on the underlying causes and/or mechanisms of action of autism and related disorders at the cellular and/or molecular level.
What are your “5 Things You Need To Bring An Audacious Idea to Fruition”? If you can, please share a story or example for each.
1 . Believe in your Mission: In our case, we are focused on understanding the brain in autism and to potentially support the development of approaches that can improve the life of those living with autism and their family. This mission is a phenomenal motivator.
2. Stay Focused: Once your mission is laid out, regularly take stock to evaluate your current and future programs to ensure that your activities are serving your end goal.
3. Build a Strong Team: I am lucky to work with excellent team members, who, besides adhering to the mission, are also experts in their fields.
4. Collaborate and Share Ideas: It’s important to be open to new approaches and ideas to solving problems, within research, and between people. What we can achieve working together is larger than the sum of its parts.
5. Build Trust: Families have entrusted Autism BrainNet with the most important selfless gift that can be given to science. This is a constant motivator to do more and to do better.
What piece of advice would you give to other organizations looking to pioneer their own impact-focused programs?
It’s important to have a clear objective, and don’t shy away from looking for excellence and involving people new to the field. New perspectives can bring important expertise to solve problems and open new discovery pathways.
Can you share a story of someone who has inspired you in your journey?
We work with families who are grieving the loss of a loved one. That’s why there is not one single story, a person, in particular, but many, parents, siblings, caretakers, who inspire me by the trust they have put in us. Their trust is a constant reminder and inspiration. We truly appreciate and value those loved ones who have been willing to tell their stories and share the lives of their loved ones with us and the community to raise awareness of Autism BrainNet.
How can our readers further follow your work or your company online?
Please visit autismbrainnet.org to learn more about our program and the process for donation. We handle the entire process and there is no cost to families.
We also maintain a 24/7 telephone helpline to answer families’ questions and/or arrange for a brain donation. In the case that the decision has been made to make a donation, we encourage people to call 877–333–0999 when a death is near or has occurred for immediate assistance.
You can also follow Autism BrainNet on social media (Facebook, X, formerly Twitter, Linkedin) and sign up for our newsletter. To learn more about SFARI visit sfari.org and the Simons Foundation at simonfoundation.org.
This was great. Thanks for taking time for us to learn more about you and your business. We wish you continued success!
Audacious Impact: Marta Benedetti Of SFARI On Leading An Audacious, Visionary, Impact-Focused… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.