Lesley College Graduate School, Cambridge , MA
1993
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
2000
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was to share unpublished data, ideas, and suggestions within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
2001
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
2002
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.
TASH
Brandeis University, Waltham , MA
2004
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
2004
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
2004
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.
Friends
of Freie Universität Berlin in New York
Children's Hospital of Philadelphia, Philadelphia, PA
2005
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
2005
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
2006
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
2006
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
2007
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
2008
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
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