Image of NLM Family Foundation banner
Image of hands, bodies, and instruments around a face: Autism is a complex developmental disability.
  SYMPOSIA BY YEAR
 
 
 
 
 
 
 


SYMPOSIA - 2009-2014

In 1998, the NLM Family Foundation began hosting a series of symposia in which invited professionals from various backgrounds and areas of expertise would convene to present their current work or research and discuss novel ideas for the advancement of autism research and treatment. Participating professionals have varied from neuroimaging researchers, neurologists, and pediatricians to special educators, psychiatrists, and speech and language pathologists.

The purpose of these symposia is to develop networks of people who can contribute to achieving the aims of the Foundation. NLM Family Foundation symposia are meant to stimulate the creative exchange of ideas that will enrich the field of autism research, education and service delivery. Importantly, they introduce influential thinkers in a format conducive to the development of productive relationships that will lead to positive changes in the lives of individuals with autism and their families.

The following list details the presentation topics, researchers, and primary focus of NLM Family Foundation symposia from 2009 through 2013. Please refer to the links on the left to read more about symposia from previous years.


Autism and Immunology– October 2017
The Nancy Lurie Marks Family Foundation, Wellesley, MA


This Boston Club meeting was a follow-up to the Immunology and Autism Boston Club that the Nancy Lurie Marks Family Foundation held at our Wellesley offices in 2014. Coming out of that meeting, the Foundation, in partnership with the Landreth Family Fund, provided grant support to several investigators working in this area. On October 20th, these investigators presented on the progress of their work.

Developing a Neuropathology of Autism Through Autism BrainNET
Matthew P. Anderson, M.D., Ph.D.
Associate Professor, Harvard Medical School
Faculty, Program in Neuroscience, Harvard Medical School
and Children's Hospital Intellectual and Developmental Disabilities Research Center (IDDRC)
Director of Neuropathology, Beth Israel Deaconess Medical Center
Consultant in Neuropathology, Boston Children's Hospital
Director (Boston Node) and Clinical Neuropathologist, Autism BrainNET

Staci Bilbo, Ph.D.
Associate Professor of Pediatrics
Harvard Medical School
Director of Research, Lurie Center for Autism
Massachusetts General Hospital

Effects of perinatal immune activation on the core and co-morbid features of ASD as modeled in mice
William Carlezon Jr., Ph.D.
Professor of Psychiatry
Chief, Division of Basic Neuroscience
Director, Behavioral Genetics Laboratory
McLean Hospital

Maternal Caspr2 reactivity in Autism Spectrum Disorder
Betty Diamond, MD
Professor & Head
Center for Autoimmune and Musculoskeletal Diseases
The Feinstein Institute for Medical Research
Professor of Molecular Medicine and Medicine
Hofstra Northwell School of Medicine

Peter Gregersen, MD
Professor & Director
Robert S. Boas Center for Genomics & Human Genetics
The Feinstein Institute for Medical Research
Professor, Molecular Medicine
Hofstra Northwell School of Medicine

Assessment of glial activation state in young adults with ASD using PET imaging
Jacob Hooker, Ph.D.
Associate Professor in Radiology
Harvard Medical School
Associate Neuroscientist
Massachusetts General Hospital
Director of Radiochemistry
Martinos Center for Biomedical Imaging

Systematic evaluation of maternal immune activation mouse model after long-term treatment with colony stimulating factor 1 receptor inhibitor
Tsuneya Ikezu, M.D., Ph.D.
Professor of Pharmacology & Experimental Therapeutics and Neurology
Department of Pharmacology
Boston University School of Medicine

Donna Landreth

Landreth Family Fund
Grandparent of a child with ASD

Robert E. Landreth
Landreth Family Fund
Oil and Natural Gas Exploration and Production
Midland, TX
Grandparent of a child with ASD

Christopher McDougle, Ph.D.
Director
Lurie Center for Autism
Massachusetts General Hospital
Nancy Lurie Marks Professor in Autism
Harvard Medical School

Galen Missig, Ph.D.
Post-Doctoral Fellow
Behavioral Genetics Laboratory
McLean Hospital

Maternal Autoantibodies in a Rat Model of Autism Spectrum Disorder
Judy Van de Water, Ph.D.
Professor of Medicine
Director, Center for Children's Environmental Health
Associate Director Biological Sciences- UC Davis MIND Institute
Division of Rheumatology/Allergy and Clinical Immunology




 

Systems Biology of Autism: Cellular Models– November 2016
The Nancy Lurie Marks Family Foundation, Wellesley, MA


The broad range of behaviors seen across the autism spectrum has been more than amply mirrored in the discovery of hundreds of mutated gene candidates proposed to explain their origins. The gap between genes and behavior poses an astonishingly difficult problem, possibly uniquely presented by each individual carrying the label 'autistic'. Yet, many similarities across the spectrum are seen by neuro-imaging and other non-invasive physiological probes, suggesting that different gene sets might have common final pathways affecting neuronal migration, synaptic plasticity, and electrical signaling across networks. This would imply that there are a few global circuits perhaps that could be modulated in a number of different ways to improve basic neurophysiological processes underlying observed social and motor activity.

In considering how much of the familiar 'autism pie' is currently explainable in terms of specific genes it is clear that a large slice is due to rare de novo loss-of-function (LOF) mutations. An attractive approach to studying these cases is to create inducible pluripotent cell lines (IPSC) and induce neuronal cell lines which can be grown to confluence in culture. Remarkably these cultures exhibit electrophysiological and connectivity patterns that seem to reflect normal activity. Interestingly, more than one cell type often appears in these preparations, characterized by surface markers, allowing the application of gene expression analysis. The recent development of facile gene modification technologies (CRISPR), supplementing short hairpin RNA approaches, opens up myriad opportunities for studying the effects of individual LOF mutations on specific cell types in a quasi-circuit context.

In this meeting, participants addressed the question of how best to apply these technologies to close the gap between genes and behavior in autism and perhaps reduce the high degree of apparent heterogeneity. The syndromic forms of autism have provided valuable insights into the general condition of autism and it is possible that each of the rare de novo mutations might do the same.

Staci Bilbo, Ph.D.
Associate Professor of Pediatrics
Harvard Medical School
Director of Research, Lurie Center for Autism
Massachusetts General Hospital


Idiopathic Autism: Characterizing Neurobiological and Molecular Phenotypes using iPSC and "Omic”
Technologies

Emanuel DiCicco-Bloom, MD
Professor
Dept. of Neuroscience and Cell Biology
Rutgers/Robert Wood Johnson Medical School


Convergence in transcriptional effects of suppressing ASD-associated chromatin and transcriptional regulators
James F. Gusella, Ph.D.
Bullard Professor of Neurogenetics
Department of Genetics
Harvard Medical School
Center for Human Genetic Research
Massachusetts General Hospital


Role of metabotropic glutamate receptors (mGluRs) in the etiology and treatment of autism
Hakon Hakonarson, MD, Ph.D.
Professor of Pediatrics
University of Pennsylvania School of Medicine
Director
Center for Applied Genomics
Children's Hospital of Philadelphia


Elucidating mechanisms of de novo DEAF1 mutations
Philip J. Jensik, Ph.D.
Associate Professor
Physiology
Southern Illinois University School of Medicine


James Millonig, Ph.D.
Associate Professor
Dept. of Neuroscience and Cell Biology
Rutgers/Robert Wood Johnson Medical School


iPSC-derived neurons to probe Tuberous Sclerosis and the mTOR pathway

Mustafa Sahin, MD, Ph.D.
Professor of Neurology
Harvard Medical School
Department of Neurology
Boston Children's Hospital


Michael Talkowski, Ph.D.
Associate Professor
Neurology
Massachusetts General Hospital

Autism Genetics: Beyond the Exome
Christopher Walsh, MD, Ph.D.
Bullard Professor of Neurology
Harvard Medical School
Chief, Division of Genetics
Children's Hospital Boston




Systems Biology of Autism: Translating Recent Developments in Neuro-imaging into the Clinical Realm– May 2016
The Nancy Lurie Marks Family Foundation, Wellesley, MA

One of the most exciting possibilities for autism treatment is to devise means to excite cortical neuronal plasticity by direct sensory, particularly auditory, and electrodermal (scalp) stimulus. To achieve this goal requires knowledge of the temporal dynamics of auditory processing of pure tones (MEG), activity-dependent responses to naturalistic acoustic inputs (fMRI), and overall connectivity patterns across brain regions (resting state networks).

Parents and family members of those with autism have often remarked that minimally verbal individuals on the ASD can sometimes hum or sing religious prayers, show-tunes from musicals, and school fight songs. This seems to suggest that the auditory facility in humans has distinct cortical pathways for activating the vocal system ('music' and 'speech'). Remarkably, this has been borne out in a recent study by Kanwisher and colleagues at M.I.T. (Norman-Haignere et al., Neuron 88, 1281-1296 (2015). It is also the case, based on the elegant work of Roberts and his collaborators at Children's Hospital of Philadelphia, that auditory information is abnormally encoded in children with autism owing to delayed cortical development (Edgar et al., Molecular Autism 6, 69-83, 2015). These two landmark studies in autism research present a great opportunity for defining imaging-based early biomarkers for delayed language development.

Any discussion of the etiology of autism is inevitably prefaced with a statement about the heterogeneity of this developmental disorder, especially when genes, proteins and circuits are invoked. Yet, many of the observable behaviors, strengths and deficits, are strikingly similar. Recent resting state imaging studies at the Berenson-Allen Centre (BIDMC) involving differently-localized brain lesions, but with similar neurological symptoms, have revealed shared functional connectivity (Boes et al., Brain, 2015 in press). Tal Kenet (Martinos Center, MGH) and associates have demonstrated that resting state circuitry in autism is abnormal and stunted during development (Kitzbichler et al, Brain, 2013). Michael D. Fox and colleagues have suggested that these discoveries will make it possible to guide the application of stimulatory electric currents in distinct spatial and temporal sequence ('a symphony of pulses') to bring about therapeutically helpful redirection of brain circuits (Fox et al., PNAS (USA), E4367-E4375, 2014).

Maria Brincker,PhD
Assistant Professor (Philosophy of Mind & Neuroscience)
University of Massachusetts Boston

Using Brain Connectivity to Localize and Treat Neuropsychiatric Symptoms
Michael Fox, MD, PhD
Assistant Professor of Neurology, Harvard Medical School
Director, Laboratory for Brain Network Imaging and Modulation
Associate Director, Berenson-Allen Center for Noninvasive Brain Stimulation
Associate Director, Deep Brain Stimulation Program
Beth Israel Deaconess Medical Center


The Spectral Signature of Functional Connectivity Abnormalities in ASD
Tal Kenet, PhD
Assistant Professor of Neurology, Harvard Medical School
Scientific Director, TRANSCEND
Principal Investigator, Department of Neurology
MIT-MGH Martinos Center for Biomedical Imaging
Massachusetts General Hospital


Maria Mody, PhD
Assistant Professor in Radiology, Harvard Medical School
Assistant in Neuroscience, Massachusetts General Hospital


Transcranial Magnetic Stimulation (TMS): A Promising Tool for Translating Pathophysiology to Novel Interventions in ASD
Lindsay Oberman, PhD
Assistant Professor of Psychiatry and Human Behavior
Brown University
Director of the Neuroplasticity and Autism Spectrum Disorder Program
Bradley Hospital


Prognostic and Stratification Biomarkers: MEG Indices, Supported by dMRI and MRS
Timothy Roberts, PhD
Vice Chair of Research in Radiology Professor of Radiology
Children's Hospital of Philadelphia


Linking Autistic Visual Symptoms to Reduced Inhibitory Signaling in the Brain
Caroline Robertson, PhD
Postdoctoral Research Fellow
McGovern Institute for Brain Research
MIT
Junior Fellow
Harvard Society of Fellows, Harvard University


Using Big Data and Micro-Movements to Help Advance Detection and Select Treatment Criteria for Neuropsychiatric Disorders

Elizabeth Torres, PhD
Associate Professor
Cognitive Psychology/Computational Neuroscience
Rutgers University

AMMT – An Intervention to Get Minimally Verbal Children with Autism to Speak
Gottfried Schlaug, MD, PhD
Director, Music and Neuroimaging Laboratory, Stroke Recovery Laboratory and Division Chief, Cerebrovascular Diseases
Associate Professor of Neurology,
Beth Israel Deaconess Medical Center and Harvard Medical School


Harnessing Technology to Improve the Lives of People with Autism – July 2014
Heller School for Social Policy and Management, Brandeis University, Waltham, MA


A  one-day workshop, “Harnessing Technology to Improve the Lives of People with Autism,” co-sponsored by the NLM Foundation and The Heller School for Social Policy and Management at Brandeis University, was held on July 23, 2014 at the Heller School in Waltham, MA. The purpose of this meeting was to discuss the potential of adaptive technology to open up for persons with autism new avenues for acquiring knowledge, improving social communication, and achieving a greater degree of independence and control over their lives. Topics included a survey of novel assistive devices and  communication technologies, consideration of the potential of the iPad and other mobile technologies to support communication and inclusion, introduction to personal health informatics, examination of the use of avatars to engage individuals in learning how to control intended movements and speech production, employment opportunities for those with ASD in the high-tech industry, vocational training programs, and educational access via distance learning.

Personalizing Autism Technology
Rosalind Picard, ScD, FIEEE
MIT Media Laboratory

Computational Measures of Psycho-Motor Performance
Elizabeth Torres, PhD
Rutgers, The State University of New Jersey

Employment for Adults with Autism
William E. Kiernan, PhD
University of Massachusetts, Boston

Screening of the documentary, “I Want to Say,” produced by Goodby Silverstein & Partners and production company Bodega in partnership with Autism Speaks, that tells the story of how assistive technology can help to unlock the voices of children with autism through technology.

Realizing the Potential of the iPad in Supporting the Communication and Inclusion of People with Autism: Promise, Practice and Pitfalls
Christine Ashby, PhD
Syracuse University

Developing Innovative Technologies to Enhance Research and Practice with Individuals on the Autism Spectrum: A Computational Behavioral Science Approach
Matthew Goodwin, PhD
Northeastern University


Proprioception and Autism– May 2014
The Nancy Lurie Marks Family Foundation, Wellesley, MA

On May 21, 2014, the NLM Foundation sponsored a Boston Club meeting titled, 'Proprioception and Autism.’ The meeting was held at the Nancy Lurie Marks Family Foundation offices in Wellesley, Massachusetts. The group addressed the question of how noisy, overwhelming, or unreliable input from the peripheral nervous system in the early stages of life might disrupt the development of a reliable cortical system for planning and executing movements and behaviors.

There is a growing literature, both philosophical and scientific, on the concept of the ‘embodied mind’, the view that our cognitive frameworks evolve from the early engagement of our muscular and sensory systems with the external world, shaping through trial and error our categories of knowledge and their inter-relationships. Early leaders in the field of autism, such as Ralph Maurer, Anne Donnellan, Martha Leary, and Esther Thelen, argued that a neurological impairment or interference with this process could be the primary cause, if not the lasting signature, of autism. Indeed, self-reports from individuals with autism, particularly those of Donna Williams, include vivid descriptions of sensory systems ‘dropping out’ during social intercourse, generating fear and uncertainty. Despite these insights from neurology, the field of autism research has come to be dominated by psychology and cognitive neuroscience, both because of the subjective ease of observing and classifying behaviors, but also the possibilities of using discrete trials with individuals to correct and modify their outward actions.

Recently, cellular neurobiology has begun to reveal the detailed macro- and micro-circuitry of sensorimotor and neuro-muscular behaviors. Observations on living animals on the time scales of real-time events have allowed investigators to examine the precise mechanisms of sensorimotor control; i.e. how the periphery feeds back to the sensorimotor cortex to reshape the very plans that continuously give rise to the movements underlying observed behavior. This has led prominent neuroscientists to take a fresh look at autism. Henry and Kamila Markram have proposed the ‘intense world’ theory of autism, for example, which posits that signals from the senses overwhelm the small ‘error corrections’ that the cerebellum has evolved to provide, and confuse the inherent learning mechanisms of the associative cortex. Elizabeth Torres and Maria Brincker have looked at autism as being a case of ‘corrupted priors’ and have provided experimental evidence that could provide the basis for new therapies.

Matthew P. Anderson, MD, PhD
Harvard Medical School
Beth Israel Deaconess Medical Center

Margaret L. Bauman, MD
Boston University School of Medicine
Integrated Center for Child Development

Gene J. Blatt, PhD
Hussman Institute for Autism
Boston University School of Medicine

New Methods for Behavioral Phenotyping of ASD Model Mice
Sandeep Robert Datta, MD, PhD
Harvard Medical School

Measuring and Understanding Repetitive Motor Movements in Individuals with ASD: A Computational Behavioral Science Approach
Matthew Goodwin, PhD
Northeastern University

Proprioception and Autism: Insights from Research on Self-Calibration
James Lackner, PhD
Brandeis University

Dara Manoach, PhD
Massachusetts General Hospital

Lindsay Oberman, PhD
Bradley Hospital

Wade Regehr, PhD
Harvard Medical School

Caterina Stamoulis, PhD
Harvard Medical School

Using the Plasticity of Peripheral Micro-movements to Characterize and Treat Subtypes of Disorders on a Spectrum
Elizabeth Torres, PhD
Rutgers University

Sam Wang, PhD
Princeton University




Neuroinflammation and Autism– March 2014
The Nancy Lurie Marks Family Foundation, Wellesley, MA

On March 13, 2014, the NLM Foundation sponsored a Boston Club meeting titled, 'Neuroinflammation and Autism.’ The discussion focused on aberrant immune responses and neuroinflammation in the etiology and pathogenesis of autism spectrum disorders. The putative relationship of immune abnormalities to autism has long been a subject of discussion amongst investigators. Once regarded as a mere curiosity, the evidence that the immune system plays a role in the etiology of autism has been increasing, particularly over the past several years. Investigators have detected brain reactive antibodies in the mothers of children with autism and elevated anti-nuclear antibodies have been detected in both children with autism and their mothers. In a Finish cohort, increasing maternal CRP levels were significantly associated with autism in offspring. For maternal CRP levels in the highest quintile, compared with the lowest quintile, there was a significant, 43% elevated risk.  It has also been suggested that that children of women with autoimmune disorders such as rheumatoid arthritis and SLE have an elevated risk for autism and that autism is associated with immune related genes in the HLA region. Abnormal cytokine profiles in autistic patients have been reported by many investigators.


Matthew P. Anderson, MD, PhD
Harvard Medical School
Beth Israel Deaconess Medical Center

William Carlezon, PhD
Harvard Medical School
McLean Hospital

Sophia Colamarino, PhD
John and Marcia Goldman Foundation
Stanford University School of Medicine

Philip De Jager, MD, PhD
Harvard Medical School
Brigham & Women’s Hospital

Antibodies, Behavior, and Cognition: The new ABC
Betty Diamond, MD
Hofstra North Shore-LIJ School of Medicine
The Feinstein Institute for Medical Research

Peter Gregersen, MD
The Feinstein Institute for Medical Research
Hofstra North Shore- LIJ School of Medicine

The Innate Immune Response to Pathogens: Genes, Networks, and Variations
Nir Hacohen, Ph.D.
Harvard Medical School
Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital
Broad Institute of MIT and Harvard

Jacob Hooker, PhD
Harvard Medical School
Massachusetts General Hospital

Tsuneya Ikezu, MD, PhD
Boston University School of Medicine

Robert E. Landreth
Oil and Natural Gas Exploration and Production

Christopher McDougle, MD
Lurie Center for Autism
Massachusetts General Hospital

Liliya Silayeva, PhD
Tufts University School of Medicine

Stress and Brain Inflammation Contribute to Autism Pathogenesis that can be Reversed by Luteolin
Theoharis Theoharides, MD, Ph.D.
Tufts University School of Medicine- Tufts Medical Center

Maternal Autoantibody Related Autism Spectrum Disorder
Judy Van de Water, Ph.D.
UC Davis School of Medicine
MIND Institute

Andrew W. Zimmerman, MD
UMass Memorial Medical Center



Autism and Big Data, An Opportunity? – December 2013
The Nancy Lurie Marks Family Foundation, Wellesley, MA

On December 18, 2013, the NLM Foundation sponsored a Boston Club roundtable discussion titled, 'Big Data & Autism, An Opportunity?’ The discussion was organized around the following themes:

1. Building an Information Commons. What technical developments are needed to combine information from research studies, clinical records, educational individual planning documents, and family-provided observations?

2. Leveraging Social Networks. How can social networks improve the lives of individuals with autism, while providing new kinds of information about the problems they face and the types of solutions that are emerging?

3. Sourcing large, multi-dimensional databases, for better nosology. Autism is defined by a set of behavioral criteria that do not map easily onto neurobiological mechanisms (brain circuits, cellular regulation, physiological circuits, and synaptic dysfunction). Can data science, applied to large genomic and epidemiological data collections, reveal finer, better defined, subclassifications and/or overlaps with mental illnesses?

4. Providing for and Protecting Individuals with Autism in the Age of Big Data. How will the healthcare industry adapt to these changes? And how will the privacy of individuals and their families be protected?

Role of the Healthcare Industry: Costs, Privacy & Innovation
David Fenske, Ph.D.
Dean, College of Information Science and Technology
Drexel University

Andy Ferrara
CEO, Boston Healthcare Associates, Inc.

Role of the Healthcare Industry: Costs, Privacy & Innovation
Thomas Goss, PharmD
Senior Vice President
Boston Healthcare Associates, Inc.

Hakon Hakonarson, MD, Ph.D.
Director, Center for Applied Genomics
Associate Professor of Pediatrics, University of Pennsylvania School of Medicine

Building an Information Commons
Isaac Kohane, MD, Ph.D.
Lawrence J. Henderson Professor of Pediatrics
Children's Hospital Boston

Rod Miller
Chief Strategy Officer
The iSchool at Drexel University

Julia O'Rourke, Ph.D.
Instructor in Pediatrics
Massachusetts General Hospital

Eric Perakslis, Ph.D.
Executive Director
Center for Biomedical Informatics (CBMI)
Harvard Medical School

Susan L. Santangelo. Sc.D.
Director, Psychiatric Research
Maine Medical Center and
Maine Medical Center Research Institute

Autism Heterogeneity:  The Need for Prospective Big Data Collection
Robert Schultz, Ph.D.
Director, Center for Autism Research (CAR)
Children's Hospital of Philadelphia

Matthew Siegel, MD
Medical Director
Developmental Disorders Treatment Unit
Spring Harbor Hospital

Sourcing Large Datasets for Better Nosology
Jordan W. Smoller, MD, Sc.D.
Professor of Psychiatry, Harvard Medical School
Professor in the Department of Epidemiology
Harvard School of Public Health
Director, Psychiatric and Neurodevelopmental Genetics Unit
Massachusetts General Hospital
Science Director
Science of Adversity and Resilience Initiative
Center on the Developing Child
Harvard University
Associate Member, Broad Institute

Leveraging Social Networks
Dennis Wall, Ph.D.
Acting Associate Professor, Pediatrics - Systems Medicine
Stanford University School of Medicine




Aging Well with Autism (55 and Older) – July 2013
Heller School for Social Policy and Management, Brandeis University, Waltham, MA


In July 2013, the NLM Family Foundation and The Heller School for Social Policy and Management at Brandeis University co-sponsored a special one-day workshop, “Aging Well with Autism (55 and Older),” at Brandeis University in Waltham, MA. The purpose of the meeting was to discuss several unique challenges faced by the growing population of individuals with autism after age 55. Topics discussed included access to medical and health care services as well as senior life planning initiatives for older adults with autism and their families.

MORNING SESSION: Healthcare Issues and Models

Medical Care for Individuals with Autism and Developmental Disabilities Over 55
Susan L. Parish, PhD, MSW
Nancy Lurie Marks Professor of Disability Policy
Director, Lurie Institute for Disability Policy
Brandeis University
Waltham, MA

Self-Determination, Aging, and Family Supports
Tamar Heller, PhD
Professor and Head, Department of Disability and Human Development
University of Illinois at Chicago
Chicago, IL

Aging into the Unknown: Autism Spectrum Disorder in Adulthood
Nora Friedman, MD
Staff Psychiatrist, Lurie Center for Autism
Massachusetts General Hospital
Boston, MA

Models for Clinical Care & Research: D-Termined Dental Program of Repetitive Tasking and Familiarization
David Tesini, DMD, MS
Associate Clinical Professor, Department of Pediatric Dentistry
Tufts University School of Dental Medicine
Boston, MA

Models for Clinical Care & Research: Preparing Potential Research Participants for the MRI Environment
Trang Nguyen, BA
Clinical Research Coordinator
Martinos Center for Biomedical Imaging, Massachusetts General Hospital
Boston, MA

HealthMatters - Innovative Health Promotion Program
Beth Marks, RN, PhD
Research Associate Professor, Department of Disability and Human Development University of Illinois at Chicago
Chicago, IL

AFTERNOON SESSION: Residential Planning Models

Mixed Income, Supportive Senior Housing as a Model
Len Fishman
Former CEO, Hebrew SeniorLife
Visiting Scholar, Heller School for Social Policy and Management
Brandeis University
Waltham, MA

The Green House Project: Meaningful Transformation that Creates Lives Worth Living (sponsored by Robert Wood Johnson Foundation)
Susan Frazier, RN, MA
Chief Operating Officer
The Green House Project/NCB Capital Impact
Arlington, VA

Generations of Hope - Multigenerational Communities (sponsored by Kellogg Foundation)
Brenda Eheart, PhD
CEO, Executive Director, and Founder
Generations of Hope Development Corporation
Champaign, IL

Aging Well with Autism (55 and Older)



Living with Autism in Adulthood – July 2012
Heller School for Social Policy and Management, Brandeis University, Waltham, MA

In July 2012, the Foundation sponsored a special one-day workshop, “Living with Autism in Adulthood,” at the Heller School for Social Policy and Management at Brandeis University in Waltham, MA. The purpose of the meeting was to discuss progressive public policy and planning initiatives relevant to adults with autism. Topics for discussion included employment, residential planning, family and community supports, communication, and the transition to more independent living.

The meeting was chaired by Clarence Schutt and Susan Parish, Ph.D., Nancy Lurie Marks Professor of Disability Policy and Director of the Lurie Institute for Disability Policy at Brandeis University. The workshop included a panel discussion on parent-led initiatives and a video presentation created by Foundation staff titled, “In Their Own Words: Living with Autism in Adulthood”, featuring the perspectives of Larry Bissonnette, Jamie Burke, Sue Rubin, and Tracy Thresher.

Aging Well with Autism Spectrum Disorders
Tamar Heller, Ph.D., University of Illinois at Chicago, Institute on Disability and Human Development

Many Pathways to Employment
William Kiernan, Ph.D., University of Massachusetts Boston, Institute for Community Inclusion

Building Community for Adults with Autism
Denise Resnik, Co-Founder, Southwest Autism Research and Resource Center

Research on Young Adulthood: New Findings, New Directions
Paul Shattuck, Ph.D., Washington University in St. Louis

Parent-Led Initiatives: Living, Learning and Linking Adults with Autism and Other Developmental Disabilities
Catherine Boyle, Autism Housing Pathways

Parent-Led Initiatives: A Parent’s Guide to Autism Services
Anne Larkin, Ph.D., Lesley University

Parent-Led Initiatives: Autism Housing Pathways
Maureen Manning, 3LPlace

Please click on the link below to view a summary of the presentations and discussions which took place at the workshop.

Living with Autism in Adulthood


 

Systems Biology of Autism: The Case for the Caudate Nucleus – February 2012
The Nancy Lurie Marks Family Foundation, Wellesley, MA

The concentrated efforts to discover genes implicated in causing autism via disruptions in neurodevelopment, or as explanations of autism as an ongoing chronic condition, have led to a long list of candidates. Many of these can be rationalized in terms of disturbed synaptic plasticity mechanisms. But this begs a larger question of where and in what circuits these altered synapses are to be found. A new generation of mouse models, into which candidate genes have been engineered, as well as advances in visualization and control using photonics, have revealed (somewhat surprisingly) that many of the synapses affected by these autism-related genes are in specific cell types. At our December 2011 Boston Club meeting, we considered specific effects on Purkinje cells within cerebellar circuits. We saw how these ‘local’ signaling differences gave rise to global behaviors in mice that could be related to autism. A similar situation is emerging for the basal ganglia. Autism-related genes (SAPAP and SHANK3), coding for post-synaptic scaffolding proteins, when mutated appear to affect the functioning of medium spiny neurons in the caudate nucleus in engineered mouse models. Presenters at this meeting ‘made the case’ for regarding cortical-basal ganglia circuits as a place to focus our attention in trying to explain why some persons with autism cannot speak, often have obsessive-compulsive tendencies, and have certain motor difficulties.

Matthew P. Anderson, M.D. Ph.D., Harvard Medical School

Margaret Bauman, MD, Harvard Medical School

Cortico-Striatal Circuit Dysfunction in Autism: Mechanisms and Potential Therapeutic Targets
Guoping Feng, Massachusetts Institute of Technology

The Surprising Deep Brain:  Striatum as a Hub in Neural Networks Implicated in Autism
Ann Graybiel, Massachusetts Institute of Technology

Martha Herbert, MD, Ph.D., Harvard Medical School

Ray Kelleher, MD, Ph.D., Harvard Medical School

Tal Kenet, Ph.D., Harvard Medical School

Dara Manoach, Ph.D., Harvard Medical School

Chris McDougle, Lurie Center for Autism, Massachusetts General Hospital

Wade Regehr, Ph.D., Harvard Medical School

Positive Feedback Loops Drive Postnatal Development
Bernardo Sabatini, HMS Neurobiology

Mustafa Sahin, MD, Ph.D., Children's Hospital Boston

Sam S-H Wang, Ph.D., Princeton University

Andrew W. Zimmerman, MD, Lurie Center for Autism, Massachusetts General Hospital



Systems Biology of Autism: The Case for the Cerebellum- December 2011
The Nancy Lurie Marks Family Foundation, Wellesley, MA

A great deal of research into the biological basis of autism spectrum disorders has revealed that impairment of basic processes at the synaptic level may be the deepest cause of this neurodevelopmental disorder. Many of the proteins implicated by genetics studies are found at the synapse and have well-established roles in mediating synaptic plasticity. A hard problem for neuroscientists is to explain how faulty processes at the synapse can account for the social and communication difficulties experienced by persons with autism. Clearly, therapeutic breakthroughs for autism would be forthcoming if a specific neuronal cell type in a specific neurological circuit were shown to be the primary site of atypical plasticity, analogous to the discovery that weakened dopamine-producing cells in the substantia nigra can result in Parkinson’s Disease. There have been suggestions over the years that Purkinje cells, the primary integrators, comparators, and output cells of the olivocerebellar circuit might function differently in autism. The purpose of this meeting was to explore the idea that damage to the cerebellum during development, or ongoing errors in synaptic regulation, might explain the social and communication deficits seen in autism.

Matthew P. Anderson, M.D. Ph.D., Harvard Medical School, Beth Israel Deaconess Medical Center

Ray Kelleher, MD, Ph.D., Harvard Medical School, Massachusetts General Hospital

Tal Kenet, Ph.D., Harvard Medical School, Massachusetts General Hospital

Determining how Purkinje-cell-specific manipulations lead to behavioral deficits consistent with autism
Wade Regehr, Ph.D., Harvard Medical School

Autistic-like behavior in Purkinje cell Tsc1 mutants
Mustafa Sahin, MD, Ph.D., Children's Hospital Boston

Dennis P. Wall, Ph.D., Harvard Medical School

Developmental diaschisis and cerebellar contributions to autism spectrum disorder
Sam S-H Wang, Ph.D., Princeton University

Andrew W. Zimmerman, MD, Lurie Family Autism Center, Massachusetts General Hospital


Institute on Communication and Inclusion: Summer Institute Pre-Conference Seminar - July 2011
Heller School for Social Policy and Management, Brandeis University, Waltham, MA

A  one-day workshop, “Institute on Communication and Inclusion: Summer Institute Pre-Conference Seminar,” co-sponsored by the NLM Foundation and The Heller School for Social Policy and Management at Brandeis University, was held on July 19, 2011 at the Heller School in Waltham, MA. The purpose of the meeting was to present a comprehensive picture of the impact that supported typing is having on the lives of individuals with autism, especially those for whom no other channel of communication is open. In some cases, supported typing has acted as a bridge to independent typing and even speech, and the program featured presentations by individuals who use supported typing extensively in their social, educational, vocational, and artistic lives.  The meeting was chaired by two influential leaders from Syracuse University in the field of Special Education and Inclusion: Douglas Biklen, Dean of the School of Education, and Professor Christine Ashby, Research Director of the Institute on Communication and Inclusion.

In the three days following the July 19th event at the Heller School, users of assistive typing, as well as educators, researchers, advocates and health care practitioners converged on Boston for the 4th annual Summer Institute on Communication & Inclusion, whose theme was ‘Finding a Voice, Finding a Place, Finding a Purpose.’

Drs. Biklen and Ashby offered a critical analysis of the communication needs of individuals with autism and the understanding of their lives and minds that has been made possible by assistive typing. Human communication is a complex cognitive and neuromuscular performance and there is still much to be learned. A concluding dialogue between Prof. Ann Graybiel (MIT) and Dr. Al Galaburda (Beth Israel Deaconess Medical Center), moderated by Dr. Clarence Schutt, looked at the neuroscience of supported typing and the promise of newAugmentative and Alternative Communication technologies from this fresh perspective.

Introduction to Supported Typing
Douglas Biklen, PhD
Syracuse University

What is Supported Typing?
Jamie Burke
Syracuse University

How has Supported Typing Changed Our Understanding of Autism?
Douglas Biklen, PhD
Syracuse University

Myths and realities of Facilitated Communication: Making sense of the research
Christine Ashby, PhD
Syracuse University

The Neuroscience of Supported Typing and the Promise of NewAugmentative and Alternative Communication Technologies

Ann Graybiel, PhD
Massachusetts Institute of Technology
Al Galaburda, MD
Beth Israel Deaconess Medical Center



Stem Cells and the Future of Autism Research and Treatment- April 2011
The Nancy Lurie Marks Family Foundation, Wellesley, MA

Induced pluripotent stem cells (iPSCs) have the extraordinary property of being able to differentiate into any somatic cell type, including cells of the neural lineage. This has rendered possible the preparation of ‘diseases in a petri dish’ wherein iPSCs from individuals with specific neurological conditions can be cultured and studied with electrophysiological and molecular biological techniques. These assays can be combined with combinatorial chemical libraries, as well as cDNA and RNAi libraries, to screen for agents that target disease-relevant pathways, thus opening new windows for therapeutic discovery.

Ultimately, stem cells could be used to repair cellular assemblies in regions of the brain thought to be affected in autism, such as Purkinje cells in the cerebellum. In view of the surprising genetic and phenotypic heterogeneity in autism-related disorders, the ability to carry out these assays in a patient-specific genetic background will remove one serious confound in the search for mechanisms and remediation.

Matthew Anderson, MD, Ph.D., Beth Israel Deaconess Medical Center

Michael E. Coulter

Daniel Ebert, M.D., Massachusetts General Hospital

Modeling Pathogenesis & Treatment of Autism Spectrum Disorders Using Patient-Specific Stem Cells: Fragile X Syndrome
Stephen J. Haggarty, Ph.D., Massachusetts General Hospital

Dissecting the Mechanisms of Cellular Reprogramming
Konrad Hochedlinger, Ph.D., Massachusetts General Hospital

Ray Kelleher, M.D., Ph.D., Massachusetts General Hospital

Mustafa Sahin, MD, Ph.D., Children's Hospital Boston

An Autism Stem Cell Biorepository: Gaining Insights from Induced Pluripotent Stem Cell Technology Philip H. Schwartz, Ph.D., Children's Hospital of Orange County

Induced Conditional Self-renewing Progenitor (ICSP) Cells
Richard L. Sidman, M.D., Beth Israel Deaconess Medical Center

Timothy Yu, MD, Ph.D., Lurie Family Autism Center, Massachusetts General Hospital

Andrew W. Zimmerman, MD, Lurie Family Autism Center, Massachusetts General Hospital


Environmental Factors and Epigenetics - November 2009

The Nancy Lurie Marks Family Foundation, Wellesley , MA

Autism is usually described in terms of behaviors, such as abnormal and repetitive movements, difficulties in producing speech, and other manifestations of impaired executive planning and motor control. These behaviors are thought to reflect underlying disconnections in the nervous system.

The causes of autism are obscure. Twin studies suggest a genetic component, thought to occur in two varieties, hereditary and ‘sporadic’ (arising in the germ line), but not with 100% phenotypic concordance for monozygous twins. Autism appears to be on the increase and affects males much commonly more than females. It is highly heterogeneous with seemingly large differences in language ability, immunological robustness, motor planning, gastro-intestinal dysfunction, and artistic and social expressiveness. Fundamental developmental processes, perhaps impacted at different points of time and in different cell-types, appear to have gone awry, leaving not a diseased or degenerative state, but possibly a new kind of organizational condition that needs to be addressed with unique biomedical approaches.

There is growing awareness that even small amounts of organic compounds, used in packaging, pest control, cosmetics, and hundreds of other every day applications, might affect neural and reproductive development. However, even if true, establishing any or several of these as proximal causes seems, at best, remote, especially on a case-by-case basis  with a highly diverse population. The explosive growth in our knowledge of chromatin remodeling and its central importance for understanding cell fate determination, as well as the development of high density platforms for mapping epigenetic marks, opens up the possibility of using cohorts of identical twins with autism to correlate differences in these marks with finer phenotypic variation.

Matthew Anderson, MD, Ph.D., Beth Israel Deaconess Medical Center

Epigenomic Approaches to the Interplay of Genetics and Epigenetics

Andrew Chess, MD, Massachusetts General Hospital

Katie Clapham

Michael Coulter

Al Galaburda, MD, Beth Israel Deaconess Medical Center

Matthew Goodwin, Ph.D., MIT Media Lab

Novel Designs to Study the Impact of Environmental Exposures on Pregnancy: Case Example of Bisphenol A
Russ Hauser, Sc.D., MD, Harvard School of Public Health

Martha Herbert, MD, Ph.D., Massachusetts General Hospital

Tal Kenet, Ph.D., Massachusetts General Hospital

Minding the Ca2+ store:  Gene x Environment Interactions Relevant to Autism and Related Neurodevelopmental Disorders

Isaac N. Pessah, Ph.D., UC Davis/MIND Institute

T.C. Theoharides, Ph.D., M.D., Tufts University School of Medicine

Simple Biosensors to Detect Endocrine Active Compounds: Application to ASD Targets
David Wood, Ph.D., Ohio State University



NIRS as a Tool for Early Clinical Diagnosis of Autism- September 2009
The Nancy Lurie Marks Family Foundation, Wellesley , MA

Autism is usually described in terms of behaviors, such as abnormal and repetitive movements, difficulties in producing speech, and other manifestations of impaired executive planning and motor control. These behaviors are thought to reflect underlying disconnections in the nervous system. Magnetoencephalography (MEG), functional neuroimaging (fMRI), positron emission tomography (PET), electroencephalography (EEG), and diffusion tensor imaging (DTI) are all being used in complementary ways to establish an understanding of autism in terms of functionally associated regions of the brain. Patterns of dynamic communication across anatomically distinct brain structures can be studied using event-triggered experimental protocols in fixed laboratory settings. There remains, however, the important challenge of detecting the early emergence of abnormal connectivity and asynchrony in the brains of at-risk infants, preferably with non-invasive, fast, and relatively inexpensive scanning procedures.

The near-infrared portion of the electromagnetic spectrum, coupled with the well-known absorption differences between oxygenated and deoxygenated hemoglobin can, in principle, allow detection of regions of active brain activity analogous to BOLD measurements with magnetic resonance spectroscopy. In fact, the absorptive properties of infrared light are ideal for somewhat deeper tissue imaging provided that scattering can be source-modeled. The development of fast multi-channel electro-optic processors and source-detector pairs deployed on skull-caps has enabled the emergence of near-infrared spectroscopy (NIRS), sometimes referred to as diffuse optical tomography (DOT). This technology could prove useful in the early detection of temporal processing or functional connectivity problems in human infants, as well as impaired blood circulation that might limit neurodevelopment.

This Boston Club addressed the progress that has been made in applying NIRS to the problem of autism. Is there a unique diagnostic niche that could be occupied by this relatively inexpensive technology? What hurdles must be surmounted before these instruments can be used to obtain replicable data over time and in comparison with other investigators? Will it be possible one day to measure absolute, rather than relative, levels of blood flow, opening up the possibility of monitoring responses to pharmaceutical or behavioral interventions?

Sharon Fox, MD, Children’s Hospital Boston

Martha Herbert, MD, Ph.D., Massachusetts General Hospital

Katherine Martien, MD, Massachusetts General Hospital

Near- Infrared Spectroscopy and High Density EEG to Study Neural Mechanisms of Cognitive Dysfunction in Autism
Andrei Medvedev, Ph.D., Georgetown University

The Social Brain and its Development in Autism
Kevin Pelphrey, Ph.D., Yale University

Developing and Validating Near- Infrared Neuroimaging for Mobile Clinical Applications
Gary Strangman, Ph.D., Massachusetts General Hospital

Neuroimaging of Autism: Connectivity and Cognition
John Van Meter, Ph.D., Georgetown University

Jennifer Wagner, Ph.D., Children’s Hospital Boston


Communications Initiative Annual Meeting- May 2009

The Nancy Lurie Marks Family Foundation, Wellesley , MA

A central theme of the NLM Family Foundation's funding programs has been the need to develop strategies to remediate the communication impairment that is such a prominent feature of autism spectrum disorders.  Towards that end, approximately two years ago the Foundation published a Request for Proposals seeking grants pertinent to this subject.  Over 140 applications were submitted in response to this RFP and, after peer review, 11 applications were selected for funding.  For this meeting, the Foundation invited all of the investigators who received funding to present the results of their work thus far. The purpose was for Foundation Trustees and staff to learn about the progress that grantees have made during the course of their funding from the NLM Family Foundation and to encourage a lively discussion about these research grants amongst all Communications Initiative grant recipients.

Auditory Processing Abilities in Autistic Individuals: Temporal Resolution Versus Temporal Processing Efficiency.

Jose Alcantara, Ph.D., University of Cambridge

Lucia Bigozzi, University of Florence

Lois Black, Ph.D., Oregon Health & Science University

ERP-based Communication Device for Nonverbal Children on the Autism Spectrum
Deniz Erdogmus, Ph.D., Northeastern University

Mirror Neuron System and Written Communication through FC in People: A Cortical Profile of Excitability and Inhibition by Means of Transcranial Magnetic Stimulation
Leonardo Emberti Gialloreti, University of Rome, Tor Vergata Medical School

Impaired Speech and Motor Planning in Autism: The Role of the Left IFG
Hill Goldsmith, Ph.D., University of Wisconsin , Madison

Matthew Goodwin, Ph.D., MIT Media Lab

Receptive Knowledge in Individuals with Autism: Eye Movements, Pupillary Dilation, and Event-Related Potentials
Barry Gordon, MD, Ph.D., The Johns Hopkins Medical Institutions

Frank Guenther, Ph.D., Boston University

Computerized Games to Promote Verbal Expression in Individuals with Autism Spectrum Disorder

Mohammed Ehsan Hoque , MS , MIT Media Lab


Sensory Stimulation
Michael Leon, Ph.D., University of California , Irvine

Insights on Developing Socially Assistive Robotics as a Tool for Socialization of Children with Autism Spectrum Disorders
Maja J. Mataric, Ph.D., University of Southern California

Maria G. Palmieri, University of Rome, Tor Vergata

Developing and Testing an Intonation-based Intervention to Improve Communication Skills in Autistic Children
Gottfried Schlaug, MD, Ph.D., Beth Israel Deaconess Medical Center

Facilitated Communication in Boys with Autism: An Analysis of Linguistic and Nonverbal Interactions
Alda Scopesi, Centro Studi Sulla Comunicazione Facilitata

In Your Own Voice: Personal AAC Voices for Minimally Verbal Children with Autism Spectrum Disorder
Jan van Santen, Ph.D., Oregon Health & Science University

Mirella Zanobini, Centro Studi Sulla Comunicazione Facilitata



Efficacy of Psychosocial Treatments for Autism - April 2009

The Nancy Lurie Marks Family Foundation, Wellesley , MA

A central premise of developmental psychology is that early experiences can influence the genetically primed cascade of events involved in the maturation of neuronal circuits. Indeed, it is now recognized that all experiences leave their marks on the physical structure of synapses through the mediation of the biochemistry of synaptic plasticity. Autism is likely due to some interference of the normal developmental pathway of the nervous system, probably owing to a combination of genetic predispositions and environmental factors present during prenatal gestation or in the first years of life.

 

Applied Behavioral Analysis (ABA) is an early intervention for individuals diagnosed with autism that presumably targets synaptic plasticity through intensive behavioral modification with feedback control. ABA is not the only early intervention that appears to work (in some cases) for persons with autism. The Floor Time Model, developed by Dr. Stanley Greenspan, is based on providing positive behavioral feedback in naturalistic settings with the therapist modeling the movements and social encounter strategies of the person with autism as a means of engaging (in modern terms) the mirror neuron system.

 

A Boston Club held on April 27, 2009 titled "Efficacy of Psychosocial Treatments for Autism" focused on this area of inquiry. The purpose of this Boston Club was to examine other approaches to early intervention that might also work by engaging social patterning circuits in the brain. The Cornerstone Method of Reflective Network Therapy, discovered by Dr. Gilbert Kliman, requires far less time than ABA, and has proven particularly effective with children with mild to moderate autism. Their best results with children with autism have been with four times a week treatments of 15 minutes each, in a classroom setting, combined with weekly parent guidance.

 

Treatment and Education of Autistic and Communication Handicapped Children (TEACCH) is another well-regarded program model aimed at meeting the needs of autistic people by using the best available educational approaches for this population known thus far and providing the maximum level of autonomy. TEACCH emphasizes understanding the culture of autism, developing an individualized person- and family-centered plan for each client, structuring the physical environment, and using visual supports to make the sequence of daily activities predictable and individual tasks understandable.


Kira Apse , MS , The Autism Consortium

 

Deborah Flaschen 

Matthew Goodwin, Ph.D., Massachusetts Institute of Technology

 

Alexandra Harrison, MD, Harvard University

Predicting and Improving Language Outcomes in Children with Autism

Ted Hutman, Ph.D., University of California, Los Angeles

 

Vanda Marie Khadem, JD, Autism Higher Education Foundation

 

Reflective Network Therapy: in-classroom treatment for preschoolers with autism spectrum disorders

Gilbert Kliman, MD, The Children's Psychological Health Center, Inc.

 

Structured Teaching with Children and Adults

Gary Mesibov, Ph.D., University of North Carolina , Chapel Hill

 

Vicki Milstein, M.S. Ed., Brookline Public Schools

 
Copyright © 2011 Nancy Lurie Marks Family Foundation
Link to homepage Link to links Link to contact page Link to search page