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| ADVOCACY, EDUCATION & SOCIAL
POLICY - PAST GRANTS |
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The Boston Conservatory, Boston, MA
2006
All
Lost to Prayers: A Family's Struggle with Autism
The
NLM Family Foundation provided support for the production
of All Lost to Prayers , a two-act opera/musical
theater piece which deals with the weight of autism on a
family. Although the piece only loosely follows Shakespeare's
plot for The Tempest, the idea of an island inhabited
by isolated and alienated individuals is at the heart of
both works. There will be four performances of All Lost
to Prayers between April 20 - April 23, 2006 at the
Boston Conservatory. The length of the performance is approximately
1 hour, 40 minutes.
The
Boston Conservatory
Brandeis University , Waltham , MA
2006-2008
Principal Investigator: Susan Birren, Ph.D.
Education and Research in Autism and Human Developmental Disorders
Solving the mysteries of autism spectrum disorders and developing effective therapies is critically dependent upon the recruitment of new research scientists into the field. The decision of young scientists and physicians to focus their research on problems related to autism can be influenced by educating students and young scientists about the importance of the field and the exciting, interdisciplinary science taking place. The investigator proposes a new model for autism education that includes the expansion of an innovative undergraduate course on autism and related disorders, integration of undergraduates into autism-related laboratory research, and training advanced graduate students and postdoctoral fellows in autism education and research. Guest lecturers will expose students to their research and clinical work in the autism field. Students will undertake independent research projects and participate in class colloquium including poster sessions and oral presentations. A web-based manual will be prepared, including a sample syllabus, reading lists and other published and on-line resources, as well as suggestions for student involvement developed from the experience of conducting this course. The goal of this project is to increase awareness of our current understanding of autism spectrum disorders and their impact on society, and to establish an ongoing mechanism for translating that awareness into a commitment to pursue autism research. This program will provide a blueprint for other institutions interesting in expanding programs in autism education and will have a significant impact on young scientists as they make decisions about their future research careers.
Click here to read the NLMFF Interview with Dr. Birren
Susan J. Birren, Ph.D.
Camp Yavneh– Hebrew Teachers College Camp & Summer School, Newton, MA
2008
Family Camp for Families Affected by Autism
In May 2009, Camp Yavneh will open an annual 5-day Family Camp for Families Affected by Autism. Yavneh's program for those on the autism spectrum will be unique. There is a great need in the Jewish community for ways to integrate families affected by autism into the mainstream of the Jewish and general community. This need is particularly acute in the more traditional segments of the community, which, in addition to the issues related to autism, have specific needs regarding religious observance that are not accommodated by existing programs. Yavneh's Family Camp program will integrate families from the entire spectrum of the Jewish community, while providing a supportive environment for such families. This will provide a vital respite for caregivers in families affected by autism, integrated programs for children on the autism spectrum with their siblings and parents, and an entrée for such families into the mainstream community. Yavneh hopes to create a program that can serve as a model and be replicated in communities throughout North America.
Camp Yavneh
Center
for the Study and Advancement of Disability Policy, George
Washington University, Washington, DC
1998
Support
for Establishment of the Center for the Study and Advancement
of Disability Policy
The NLM Family Foundation provided seed money to support
the establishment of the Center for the Study and Advancement
of Disability Policy at George Washington University. With
Professor Robert Silverstein serving as Director, the Center
for the Study and Advancement of Disability Policy conducts
research and analysis of public policy issues which directly
affect individuals with various disabilities and their families.
It is hoped that through their research and analysis, the
Center might develop solutions to adequately meet the needs
of individuals with disabilities and their families and
the concerns of public and private entities. Additionally,
the Center provides public education, leadership development
and training, technical assistance and information dissemination
to disability groups, international, national, state, local,
and private sector leaders and others interested in learning
about the laws and programs which affect individuals with
disabilities and their families.
Center
for the Study and Advancement of Disability Policy
The Children’s Hospital of Philadelphia, Philadelphia, PA
2005-2006
Principal Investigator: Susan Levy, MD
Creation of a Database for the Regional
Autism Center at Children's Hospital of Philadelphia
This grant supports the creation of a database for the Regional
Autism Center at the Children’s Hospital of Philadelphia.
The Regional Autism Center treats one of the largest populations
of children with autistic spectrum disorders in the nation,
and provides comprehensive, coordinated, family-centered care,
while continually striving to offer a repository of knowledge,
support and guidance to affected families. The creation of
a database is essential to strengthening the Center's research
program and expediting collaboration and investigation of
clinical and research questions facing these children and
their families.
Children’s
Hospital of Philadelphia - Regional Autism Center
Hebrew
College, Newton Centre, MA
2005-2006
Advancing the Jewish Special Education Program
at Hebrew College
Despite the significant of the Bar/Bat Mitzvah in the
Jewish life cycle, most synagogues are unprepared to accommodate
children with special needs, and most tutors do not have
the skills to teach them effectively. The NLM Family Foundation
supports Hebrew College who, in partnership with Boston-based
Special Needs program, Etgar L’Noar, serves children
with moderate to severe special needs who are approaching
Bar/Bat Mitzvah. These students have a variety of physical,
cognitive, and/or behavioral impairments. Nearly half have
diagnoses on the autism spectrum, in addition to other diagnoses
in many cases. The program provides individual training
to children and a supportive community of other Jewish students
with special needs, while offering a living laboratory experience
for Hebrew College student- teachers. Working with his/her
student- teacher on an individualized program, each child
has the opportunity to study, prepare, and practice the
prayers, blessings, Torah reading, d’var torah, and
other elements of his/her particular Bar/Bat Mitzvah. During
group activities students practice their skills in a supportive
environment. The curriculum also includes a tzedekah project
for the class as a whole, so that these students, who have
received so much help from others, can themselves experience
the gift of giving. The students perform the ceremonies
in their home communities so that they can become more integrated
in the communities to which they belong.
Hebrew
College
Heller School , Brandeis University,
Waltham, MA
1997
Principal Investigator: Marty Krauss, PhD
Feasibility
study for large-scale study on family caregiving and the
social lives of adults with autism
Review of the literature in 1997 revealed a lack of
information on the consequences of lifelong caregiving among
parents of adults with autism and a lack of information
on the range of supports needed to ensure fulfilling lives
for adults with autism. This study involves a comprehensive
search of the literature on issues facing families of adults
with autism, for an assessment of various sampling strategies
necessary for the conduct of a major research study on families
of adults with autism, and for the preparation of a proposal
for the conduct of research on families of adults with autism.
The funding will be used to finalize sample recruitment
strategies, establish a Parent Advisory Group, develop and
pilot-test screening procedures, finalize research design,
and recruit and screen approximately 400 families. The goal
of the subsequent study is to conduct the first large-scale
investigation of families of adults with autism and of the
social lives of adults with autism.
Heller
School Brandeis University
Lesley University, Cambridge , MA
2001-2004
Opening
Doors for People with Autism through the Arts
The
purpose of the project is to include adults with autism
in a program using the arts to increase the opportunities
for social interaction and to expand the participants' repertoires
of self-expression. Activities include visual arts,
music, movement, and photography lessons. The program, run
by Lesley University, affords people labeled with autism
and typical adults, including graduate and undergraduate
students, to interact together in a university setting while
participating in learning about the arts.
Lesley
University
Museum of Fine Arts , Boston, MA
2003, 2004
Pilot
Program for Adults with Cognitive Disabilities and Autism
The
NLM Family Foundation supports workshops at the Museum of
Fine Arts designed for people with cognitive, learning,
and/or developmental disabilities, those with autism spectrum
disorders, and their friends and families. One workshop
is intended for young people to age 12, and the other is
for adolescents and adults. The participants explore the
art in the Museum of Fine Arts ' collections and exhibitions
through sound, theater exercises, music, movement, and visual
art.
Museum
of Fine Arts
National Alliance for Autism Research, Princeton, NJ
1999-2004
Research
/ Fellowship Program Support and Operational Support
This
grant is in staged fulfillment of an ongoing five-year NLM
Family Foundation pledged Challenge Grant to National Alliance
for Autism Research (NAAR). NAAR's mission is to fund, promote,
and accelerate biomedical research and science-based approaches
that seek to determine the causes, prevention, treatments
and a cure for autism spectrum disorders. NAAR provides
grants to researchers for innovative, new pilot studies;
mentors fellowships to recruit new researchers to focus
on autism; and funds collaborative research programs that
have the potential to yield scientific advances in the field
of autism.
National
Alliance for Autism Research
National Alliance for Autism Research, Princeton, NJ
1997-1999
Support
for a national voluntary health agency for autism research
and public advocacy
In the mid 1990s, the NLM Family Foundation recognized
the need to create a national voluntary health agency dedicated
to autism research. Unlike so many other conditions at that
time, autism suffered from a lack of public awareness and
a coherent national agenda for autism research. The NLM
Family Foundation sought out organizations which it thought
might evolve into this type of national organization. Following
extensive due diligence, the Foundation provided critical
early seed money to support this fledgling organization
to enable it to grow into a large, powerful voluntary healthy
agency that raises millions of dollars for autism research
and public advocacy.
National
Alliance for Autism Research
Personal Advocacy and Lifetime Support (PALS), North Waltham,
MA
2002, 2004
Operating Support
The
NLM Family Foundation provides support to PALS, a non-profit
organization whose mission is to help parents and other
caregivers establish and maintain a lifetime plan for a
safe and secure future for their loved one with special
needs. Many families with an individual with special needs
often express concern over what will happen to their loved
when they are gone. PALS believes that the best guarantee
of a safe and secure future for individuals with special
needs is a circle of caring, committed friends, family members,
supporters, and professionals actively involved in their
lives. The cornerstone of PALS is a Personal Support Network,
which consists of people who make a long term commitment
to be in a voluntary relationship with individuals with
special needs.
Personal
Advocacy and Lifetime Support (PALS)
Project Stretch, Natick, MA
2003
Support
for the Production of a Video for Dentists on Providing
Dental Care for Children with Autism
Dr.
Tesini has a Boston-area dental practice that provides care
to special needs populations including individuals with
autism. Because of their increase sensitivities to
various sensory stimuli such as loud noises, individuals
with autism often have difficulty tolerating normal dental
procedures. Using repetitive tasking and familiarization
techniques that he has pioneered, he has had significant
success providing dental care without sedation to this population.
Dr. Tesini has created a dental program based on these techniques
which if disseminated amongst dental professionals has the
potential to vastly improve dental experiences for individuals
with autism. The NLM Family Foundation is funding the production
of a video, produced by Dr. Tesini, intended to train dental
professionals on these techniques.
Project
Stretch
Special Care Dentistry, Chicago, IL
2006
Production
of a DVD Presentation on Dental Care for Individuals with
Autistic Spectrum Disorder for the 18 th Annual Meeting
on Special Care Dentistry
This
grant supports the development and distribution of a DVD
presentation on Dental Care for Individuals with Autistic
Spectrum Disorder. The DVD, which will include video highlights
from the 2004 NLMFF-supported symposium on dental care for
individuals with autism as well as moderator comments from
Dr. David Tesini and Dr. Clive Friedman, will be presented
at the 18 th Annual Meeting on Special Care Dentistry. The
theme of the meeting is, "The Future of Special Care Dentistry
- evidence based practice, policy, research and education."
The objective of this DVD project is to increase awareness
and understanding of autism amongst health care practitioners
and administrators and to examine public and health policy
issues related to autism. Special Care Dentistry is a unique
international organization of oral health professionals
and other individuals devoted to promoting oral health and
well being for people with special needs.
Special
Care Dentistry
State of the Art, Inc., Washington, DC
2007-2008
Television Documentary Project: "The Science of Autism"
The Foundation provided a challenge grant to State of the Art, Inc. to underwrite the production of a television documentary on the science of autism. The film will provide an overview on the most current autism research in the areas of genetics, immunology, epidemiology and brain physiology. The documentary will be approximately one hour in length and will be a co-production of State of the Art, Inc and KCET, Los Angeles . It will be broadcast on KCET and public television stations throughout the United States. In the first broadcast release, KCET estimates audience reach will be 6 million households and 8 million individuals.
State of the Art, Inc.
State of the Art, Inc., Washington, DC
2006
Distribution of "Autism
Is A World" to Departments of Special Education at
Colleges and Universities across the United States and Canada
The
NLM Foundation supported the distribution of DVD copies
of the Oscar-nominated documentary film, "Autism Is A World",
to nearly 650 Departments of Special Education at colleges
and universities across the United States and Canada . The
goal of this project was to provide departments of Special
Education with educational materials for use in the training
of undergraduate and graduate students in their programs
on issues related to autism and augmentative and alternative
communication. "Autism Is A World" provides a
unique and candid look into the world of autism through
the eyes of Sue Rubin, a 26-year old Los Angeles woman diagnosed
with autism at age four. Rubin, who had no effective means
of communication, was considered to be mentally retarded
until the age of 13 when she began using alternative and
augmentative communication as a step leading towards independent
communication. Written by Rubin herself, the 40-minute film
details her innermost thoughts regarding her experiences
of living with autism, relationships with others, and perceptions
of self. Throughout the film, Rubin provides insight into
the challenges of being an individual, disabilities-rights
activist, and college student living with autism. The film
was nominated for a 2004 Academy Award for Best Documentary
Short Subject by the Academy of Motion Picture Arts and
Sciences, and received the 2005 Henry Hampton Award for
Excellence in Film & Digital Media from the Council
on Foundations. "Autism Is A World" also received the 2005
Media Excellence Award from the Autism Society of America,
the 2006 Edward R. Murrow Award for National News Documentary,
and a 2006 CINE Golden Eagle Award.
State
of the Art, Inc.
State of the Art, Inc., Washington, DC
2005
Support
for the Distribution of "Autism Is A World" to
US Public Libraries and Production of a Spanish Translation
of the Film
Academy
Award nominated documentary, "Autism Is A World",
aired on CNN Presents on May 22, 2005. The purpose of this
grant is to underwrite the distribution of free copies of
"Autism Is A World" to 16,000 public libraries
across the United States and the production of a Spanish
translation of the film. For more information about "Autism
Is A World", please visit the film's web page at www.autismisaworld.com.
State
of the Art, Inc.
TASH, Baltimore, M.D.
2002
Grant 1: A Program
to Increase Opportunities for People with Autism to have
an Impact on Disability Related Public Policy
Grant
2: Creation and Dissemination of a CD-Rom / Website
Action Guide On Influencing Public Policy as it Relates
to Disability Issues
Grant 3: Assistance for the Production of a Television
Documentary on Living with Autism
TASH
is an international association of people with disabilities,
their family members, and professionals advocating for inclusion
of all people in all aspects of society. Their concern is
with human dignity, civil rights, education, and independence
for all individuals with disabilities. The NLM Family
Foundation is supporting three grants at TASH. Grant
1 provides funding for the development of self advocacy
programs for people with disabilities. Grant 2 provides
funding for the creation and dissemination of a CD-rom/
website highlighting key lectures and workshops from a TASH
International Conference. Grant 3 provides funding
for the production of a PBS television documentary which
highlights the experiences of people with autism and communication
difficulties whose lives were enriched once they were provided
with tools to foster communication.
TASH
Volen National Center for Complex Systems, Brandeis University,
Waltham, MA
2002-2004
Understanding
Autism: A Grant to Fund New Initiatives in Autism Education
and Research at the Volen Center and the Center for Behavioral
Genomics at Brandeis University
This
project is comprised of three components: (1) Support for
creation of a neurobiology course at Brandeis focused primarily
on autism spectrum disorders; (2) Support for a symposium
to celebrate the opening of the Behavioral Genomics Center
and 10-year anniversary of the Volen Center. The symposium
will explore aspects of autism dealing with cognitive systems,
neuroscience, and molecular issues. (3) Support for visiting
scholars with autism expertise who will be participating
in research collaborations, teaching, and symposia.
Projects will be run by a steering committee consisting
of Dr. Susan Birren, Dr. Marty Krauss, Dr. Sasha Nelson,
Dr. Clarence Schutt and Dr. Art Wingfield.
Volen
National Center for Complex Systems
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