UC Davis MIND Institute Expands its Focus to Down Syndrome
Leonard Abbeduto, PhD
Guest blogger: Leonard Abbeduto, PhD
The UC Davis MIND Institute is internationally recognized and admired for its cutting-‐edge research and clinical programs focused on autism spectrum disorders. Fewer people, however, know that the MIND Institute also has world-‐class programs in fragile X syndrome, ADHD, Tourette syndrome, and 22q11.2 deletion syndrome. As Director of the MIND Institute, I am pleased to announce that the Institute is beginning to build programs on Down syndrome.
I began my position as the Director of the MIND Institute on August 1, 2011. I am also the holder of the Tsakopoulos-‐Vismara Endowed Chair and a professor in the Department of Psychiatry and Behavioral Sciences at UC Davis. Before coming to UC Davis, I was the Associate Director for Behavioral Sciences and Director of the University Center for Excellence in Developmental Disabilities at the Waisman Center of the University of Wisconsin-‐Madison. I am trained as a developmental psychologist and have conducted research on the course, causes, and consequences of intellectual and developmental disabilities for more than 30 years. I am particularly interested in language and communication challenges, although I also have written about the impacts of disabilities on parents and other family members. Down syndrome has been an important focus of my research for many years.
The MIND (Medical Investigation of Neurodevelopmental Disorders) Institute was founded by families who have children with autism. These families were committed to accelerating scientific discoveries about the causes of, and treatments for, autism. The founding families were extremely forward thinking and recognized the need for interdisciplinary collaboration in the study and treatment of autism. Importantly, these families also recognized the value of the Institute expanding its focus to other developmental challenges. In fact, we can learn a great deal about autism by studying conditions like fragile X syndrome and learn much about these other conditions by studying autism, and the founding families understood the value of such synergies when they designed the MIND Institute.
As Director, I am strongly committed to continuing to grow our programs in autism because autism is at core of the MIND Institute. At the same time, however, I believe there is a need for, and great value in, adding programs in Down syndrome. Recent estimates place the prevalence of Down syndrome at 1 in 691 births, and it is the leading known genetic cause of intellectual disability. Nationally, however, scientists have devoted less attention to Down syndrome than to other less prevalent conditions; thus, there is much we do not understand about Down syndrome. For example, recent findings suggest that as many as 10 to 20% of children with Down syndrome also meet diagnostic criteria for autism. This is a puzzling finding because we often think of individuals with Down syndrome has being highly sociable and quite interested in socializing with other people. Consequently, I believe that Down syndrome fits well with the mission of the MIND Institute and that our talented scientists and clinicians are well positioned to simultaneously advance understanding of both Down syndrome and autism.
Beginning a new program is difficult, however, and I am asking for the help of families who have sons and daughters with Down syndrome. There are several ways that families can help. First and foremost, families can help by volunteering for research projects at the MIND Institute. In my own laboratory, we are currently conducting a study of language development that is funded by the National Institutes of Health (NIH). The study is designed to understand the ways in which memory problems may impact language learning in adolescents and young adults with Down syndrome. The findings should set the stage for the development of interventions to improve memory and language. We have been incredibly pleased with the response from the Sacramento Down syndrome community. With the help of the DSIA, we have recruited a large number of families into the study and are meeting all study milestones. Project staff have praised the level of support and enthusiasm of families, and I think the teens and young adults are enjoying the experience of being in a research study. The strong participation of families will also be incredibly valuable as we at the MIND Institute apply to the NIH for more grants and contracts to study an even wider range of topics related to Down syndrome.
As new studies start to recruit families, we will post announcements on the MIND Institute website. We also will contact the DSIA and other organizations that support families. Please consider volunteering for these studies. In most cases, we can accommodate families’ busy schedules and we promise to make all families feel welcome. Our staff are highly skilled at working with people of all ages and abilities and so, participating in research can be a positive experience for everyone. There is no cost for participating in research and we are always eager to share our results with families.
A second way in which families can help us grow our programs in Down syndrome is by attending educational events at the MIND Institute. We support two annual lecture series that are open to the community. The “Distinguished Lecture Series” brings scientists from around the world to the Institute to present their most current findings. These are typically very technical lectures, but families are welcome and often find them useful for staying abreast of the most current work in the field. On October 10, 2012, Dr. Roger Reeves of Johns Hopkins University will present a lecture in this series entitled, “From Mice to Men, Translational Studies in Down Syndrome.” Please see the website for details. We also host a “Minds Behind the MIND” series, which includes presentations by MIND institute staff. These presentations are less technical and are designed for a lay audience. We are planning a Minds Behind the MIND presentation on Down syndrome for January of 2013; stay tuned for details! There are many other events planned for the coming year, from workshops to lectures and an open house, and many events will be relevant to issues of concern to families affected by Down syndrome.
A final way families can help, of course, is by making a financial gift to the MIND Institute. Families can designate their gift for a specific program, such as “research on Down syndrome.” All gifts are appreciated, no matter their size. I am honored to be a part of the MIND Institute, UC Davis, and the Sacramento community. I look forward to collaborating with the families of this community to build world-‐class programs of research, clinical care, and education in Down syndrome. We can improve lives together!