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Lesley College Graduate School, Cambridge , MA

Summer Autism Institute: Critical Issues in Facilitated Communication

The NLM Family Foundation provided support for the Summer Autism Institute: Critical Issues in Facilitated Communication, a three-day conference designed to examine current issues and research in the education and treatment of autism, pervasive developmental disorders, and related communication and behavior disorders. The conference was coordinated by Anne Larkin, Susan Gurry, Patricia Crain de Galarce, and Diane Fitzgerald. Experts from the fields of neurology, psychology, special education, education, speech and language pathology, as well as persons who use facilitated communication gave presentations.

Lesley University

Syracuse University, Syracuse , NY

Expanding Horizons for New Research into Facilitated Communication

The meeting was designed to foster interdisciplinary discussion concerning future research directions for inquiring about facilitated communication and related communication strategies for people with autism and other developmental disabilities. Presentations included several by researchers who are in the midst of conducting quasi-experimental investigations of facilitated communication. Among those in attendance were Margaret Bauman, Doug Biklen, Donald Cardinal, Anne Donnellan, and Andrew Grayson. This was part of a larger conference entitled, "International Conference on Facilitation."

Syracuse University

New England Medical Center, Atlanta , GA
2000, 2001, 2002, 2003

Callaway Gardens Annual Autism Genetics Workshop

The purpose of the Callaway Gardens Annual Autism Genetics Workshop was to share unpublished data, ideas, and suggestions within the Autism Genetics Cooperative group, form limited collaborations for specific purposes, and generally spend 3½ days discussing how to find genes that predispose people to autism. This event was co-sponsored with National Alliance for Autism Research.

New England Medical Center

Federation of Behavioral, Psychological and Cognitive Sciences, Washington, DC

Science and Public Policy Seminars on Autism

This was a series of Science and Public Policy seminars on autism, featuring Drs. Morton Gernsbacher, Geraldine Dawson, Edward Cook, and Margaret Bauman.   These events were co-sponsored by the National Alliance for Autism Research and the NLM Family Foundation.  Four separate talks were held on Capitol Hill and served to educate members of Congress and their staff about autism and the policy implications of some of the latest research.  This series concluded in June of 2002.

Federation of Behavioral, Psychological and Cognitive Sciences

TASH, Boston , MA

Breaking the Barriers: New Ways of Thinking that Lead to Civic Participation (Pre-Conference Session)

The purpose of this pre-conference session was to explore the extent to which people with autism, many of whom communicate with Facilitated Communication, were interested in becoming more involved in public policy work, and to begin to explore what system changes were necessary to allow this to occur. The event was an interactive dialogue aimed at exploring the changing perceptions of autism and communication. The pre-conference session was intended to move beyond training and research to support FC users to develop a voice nationally in order to influence policy.


Brandeis University, Waltham , MA

Symposium on Autism and Behavioral Genomics

The Symposium on Autism and Behavioral Genomics was sponsored to celebrate the grand opening of the National Center for Behavioral Genomics at Brandeis University and the 10 th Anniversary of the Volen National Center for Complex Systems. Presenters included Catherine Dulac, Ph.D., Leslie Griffith, M.D., Ph.D., Thomas Insel, M.D., Rudolph Jaenisch, Ph.D., Edward Jones, Ph.D., David Skuse, M.D., and Charles Zucker, Ph.D.

Brandeis University

International Association for Disability and Oral Health, Calgary , Alberta

Addressing Dental Care for Individuals with Autistic Disorders (Pre-Conference Symposium)

Held at the University of Calgary , the symposium was a full-day pre-conference event at the XVII International Congress on Disability and Oral Health hosted by the International Association for Disability and Oral Health. This pre-conference symposium focused on providing dental care to those with autistic disorders. Presentation topics included Advocating for Access to Dental Care, Identifying Behavior and Management Strategies, Oral Findings in Children with Autistic Disorders, and Adverse Oro-Facial Reactions to Medications Used to Treat Autism. With funding from the NLM Family Foundation, Dr. Tesini led a pre-conference symposium focused on providing dental care to individuals with autism.

International Association for Disability and Oral Health

Friends of Freie Universität Berlin in New York- Der Freie Universität Berlin

Organizational Meeting for Dahlem Workshop entitled, "Re-conceptualizing Autism: Identifying the Neural Mechanisms Underlying Autistic Behaviors"

The NLM Family Foundation supported a preliminary, organizational meeting held in Chicago in preparation for a Dahlem Workshop entitled, "Re-conceptualizing Autism: Identifying the Neural Mechanisms Underlying Autistic Behaviors". The Dahlem Workshop on autism research brought together scientists from a broad range of disciplines to develop a new developmental focused research agenda for autism that would refine the behavioral phenotype of autism and identify neural, genetic, epigenetic, and environmental mechanisms that mediate autistic behaviors. Themes for working groups were The Autistic Nervous System and Personal Adaptation; Systems Neurobiology through the Life Span; Gene Discovery, Gene Regulation, and Neurogenetic Models; and Environmental Mediators: Risk and Protective Factors.

Children's Hospital of Philadelphia, Philadelphia, PA

Community Responses to Autism: Public Health and Public Policy Challenges

The NLM Family Foundation provided support for a conference on policy issues in the delivery of care and services to individuals with autism entitled, "Community Responses to Autism: Public Health and Public Policy Challenges". This event was held at the Children's Hospital of Philadelphia in June of 2005. Topics of discussion included Early Identification and Diagnosis, Funding Issues, Models of Care, Legal Rights Within the System, and Coordination of Medical Care.

Children's Hospital of Philadelphia

University of Washington CPEA and STAART Centers, Seattle, WA

Autism Neuroimaging Collaborative Research Meeting

Many autism research groups have neuroimaging research projects, which utilize magnetic resonance imaging for structural, functional, and metabolic imaging, included in their programs. Centers are currently using their own protocols for data acquisition and analysis and many of studies from these groups have yielded inconsistent results. The lack of consistency may result from relatively small sample sizes, differences in subject characteristics, differences in scan acquisition details, differences in fMRI task paradigms, and differences in data analysis techniques.

This meeting provided the opportunity for researchers to discuss possible options for making the most meaningful use of data already collected at various sites and to plan for future studies whereby more consistent methods of data collection and analysis will be adopted by as many sites as possible. Researchers discussed development of the computational infrastructure needed to support data-sharing among various groups, including the possibility of implementing a peer-to-peer neuroimaging network.

University of Washington Autism Center

Centre for the Study of Learning, Georgetown University , Washington , DC

The 25th Rodin Remediation Academy Conference – “Neural Basis of Skill Acquisition, Reading , and Dyslexia.”

The Foundation provided support for the 25th Rodin Remediation Conference held at the Georgetown University Medical Center in Washington, DC on October 18-20, 2006. The purpose of the Rodin Remediation Academy Conference was to create a multidisciplinary forum for the dissemination of recent scientific discoveries regarding the etiology and treatment of dyslexia. The meeting brought together the world's experts on dyslexia, prominent scientists from related disciplines, as well as students, teachers, parents, and physicians interested in the remediation of developmental disorders. A primary aim of the conference was to play a crucial role in the development of a new generation of scientists who will go on to pursue research in dyslexia and related fields. The conference, entitled “Neural Basis of Skill Acquisition, Reading , and Dyslexia,” emphasized the role of skill acquisition and learning, a rapidly developing field of neuroscience research, which provides a useful perspective for the study of reading. The program consisted of lectures given by leading neuroscientists and experts in research on developmental dyslexia. Additionally, poster presentations provided a venue for less formal interactions and the participation of both junior and senior researchers, and the Norman Geschwind-Rodin Prize was presented at an awards ceremony during the conference.

Georgetown University Center for the Study of Learning

Cold Spring Harbor Laboratory, Lloyd Harbor, NY

A Critical Assessment of Autism Genetics

The NLM Family Foundation provided support for a meeting, entitled, “A Critical Assessment of Autism Genetics” hosted by the Banbury Center at Cold Spring Harbor Laboratory, which focused on emerging data in autism genetics. Although twin and family studies have demonstrated a strong genetic etiology, it has been difficult to identify susceptibility genes for autism that are influencing a majority of patients. There is increasing optimism about identifying susceptibility genes due to larger numbers of families being assessed, consortia being formed, and the development of better phenotype assessment and family history tools. Additionally, new technologies have been developed to perform high density genetic marker studies as well as assess the whole genome for alterations not detected by traditional methods. This meeting focused on clinical considerations, whole genome genetic studies, candidate genes and regional association studies, chromosomal abnormalities and statistical genetics. It brought together a prestigious, international group of researchers at an opportune time to critically assess our understanding of the genetic basis of autism and future directions for research in this area.

Cold Spring Harbor Laboratory

National Press Foundation, Boston, MA

Press Seminar on Autism Spectrum Disorders

The NLM Family Foundation sponsored a one-day journalist training program on autism spectrum disorders on October 15, 2007 in Boston . Organized by the National Press Foundation and offered at no cost to selected journalists, the program enabled working journalists to keep pace with the complex topics they cover and develop new skills, sources, and story angles. The objective of the program was to help to increase public knowledge about a range of issues relevant to autism spectrum disorders by educating journalists whose work reaches millions of readers, listeners, and viewers. Topics of discussion included Introduction to Autism Spectrum Disorders, Diagnosis and Early Detection, Biomedical Research, Treatment, Autistic Children and the Educational System, and the Needs of Adolescents and Adults with Autism.

National Press Foundation

Asperger's Association of New England, Waltham, MA

Support Towards the Asperger's Association of New England's Adult Conference: Know Thyself: The Key to a Better Life 2008

The Foundation provided support for the Asperger's Association of New England's Adult Conference: Know Yourself: The Key to a Better Life 2008. This full-day conference was exclusively for adults with Asperger Syndrome (AS) and was held on July 26th at Bentley College in Waltham, Massachusetts . The conference had many purposes including: Building community among a marginalized population of adults with Asperger Syndrome; Decreasing isolation and loneliness; Increasing connection and sense of belonging; Teaching concrete skills and strategies to improve quality of life at home, in relationships, and in the workplace; and instilling a sense of pride among AS adults by increasing awareness of the breadth of talent and level of accomplishment within their community which is filled with scientists, writers, artists, musicians, engineers and activists. The keynote speaker was Valerie Paradiz, Ph.D., well-known author of Elijah's Cup and parent of a teen with AS who has since been diagnosed with AS herself. She is an inspiration to those who see Asperger Syndrome as a neurobiological difference instead of a disorder.

Asperger's Association of New England

Maine Medical Center Research Institute, Scarborough, ME

Autism & Developmental Disorders Inpatient Research Collaborative

This grant supported the first national meeting of physicians who specialize in the hospital treatment of children with autism.  In the Fall of 2011, the directors of the eleven specialized psychiatric hospital units in the US that exclusively treat children with autism collaborated on a publication and formed a research collaborative. These hospital units admit over 600 children with autism a year into controlled environments for an average stay of 42 days. The collaborative has met monthly by teleconference since October 2011, developed a website for the Autism & Developmental Disorders Inpatient Research Collaborative and begun forming study questions. Areas of potential inquiry include: developing better tools to diagnose co-occurring psychiatric disorders in children with ASD; performing early clinical trials on novel compounds; evaluating treatments for self-injurious behavior and measuring the effect of intensive multi-modal treatment. This grant supported the gathering of 15-20 investigators at the Maine Medical Center Research Institute to facilitate communication and idea development to develop research questions into full-fledged proposals for external funding.

Autism & Developmental Disorders Inpatient Research Collaborative

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