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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!

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Comments

2 Responses to “UC Davis MIND Institute Expands its Focus to Down Syndrome”
  1. Andresa Dominguez says:

    My son is 6 months old and has Down Syndrome. He has making these movements where he stretches his arms and legs and stiffens his body. They last about 1 second but he will get hundreds of these a day and they usually come in clusters. Is that something being studied at the Institute? I have a referral to UCSF Neurology. Should I get my son seen at UCDavis instead? Thank you

    • DSIA2 says:

      Hello! I would keep your current appointment yet give Dr. Abbeduto a call at the MIND Institute and see what studies they currently have and if your son would be a candidate for any of them.

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