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ADVOCACY, EDUCATION & SOCIAL POLICY - PAST GRANTS

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



Boston Jewish Film Festival, Boston, MA
2016

Support for the 2016 ReelAbilities Film Festival

The NLM Family Foundation provided support for the ReelAbilities Film Festival held on April 3-14, 2016 at various venues throughout the Boston area. The Festival is dedicated to promoting awareness and appreciation of the lives, stories and artistic expressions of people with different disabilities. This year’s Festival featured the film, “Autism in Love”, directed by Matt Fuller. The documentary offers a warm and stereotype-shattering look at four people with autism pursuing and managing romantic relationships. Almost all of the Festival events are offered free of charge to the general public.

Boston Jewish Film Festival

REELAbilities Boston



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.



Brookline Education Foundation, Brookline, MA
2009-2010


Using Yoga to Improve Self-Regulation, Motor Skills and Communication in Young Children with Special Needs


The NLM Family Foundation provided a grant to the Brookline Education Foundation to sponsor two early childhood educators’ participation in a five day teacher-training program designed to help educators of children with special needs discover the many benefits of yoga. In this program, titled “Every Kid’s Yoga: Teaching Yoga to Children with Special Needs,” participants learned a variety of yoga-based techniques to support and enhance other therapeutic modalities (occupational therapy and speech and language therapy) resulting in improved learning and school performance. This program provided ideas to address issues associated with disabilities such as Autism Spectrum Disorders, Sensory Processing Disorders, Speech and Language Based Learning Disabilities, and Attention Deficit Hyperactivity Disorder. The anticipated outcome of this project would be for Brookline educators to receive formal training by learning a systematic and integrated therapeutic approach to teaching yoga for use within their early childhood programs. The intent is for students to present with improved self-regulation, focus, organization, and ‘availability’, all necessary prerequisites for learning. Their hope is that using yoga with their students and through collaboration with other Brookline Early Education educators, they will directly improve the education of al Brookline early childhood students.

Brookline Education Foundation


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



Cold Spring Harbor Laboratory, Cold Spring Harbor, NY
2007-2011

Support of Postgraduate Courses at Cold Spring Harbor Laboratory related to Autism Spectrum Disorders as part of the CSHL Brain Health Initiative: Focus on Autism and Related Developmental Disorders

The NLM Family Foundation, in partnership with other autism-focused organizations, supports educational programs at Cold Spring Harbor Laboratory (CSHL) related to autism spectrum disorders. As part of the Brain Health Initiative being developed at CSHL, CSHL is now working on new postgraduate courses designed to promote greater understanding of the neurobiological and genetic mechanisms affecting brain health. To enhance and extend research efforts on autism and related developmental disorders, the Initiative's Focus on Autism and Related Developmental Disorders has developed two new postgraduate lecture courses led by a distinguished faculty of top researchers from around the world. One course, Workshop on Autism Spectrum Disorders takes an integrative approach to present the clinical, genetic, neurobiological and cognitive elements of autism spectrum disorders to senior postdoctoral fellows, assistant professors and neuroscience faculty interested in initiating research in these topics. The second course, Biology of Social Cognition , addresses how cognitive processes involving social behavior are developed and how they are altered or dysregulated in autism spectrum disorders and other developmental disorders.

Cold Spring Harbor Laboratory



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


Houston Methodist Hospital, Houston, TX
2011-2012

Principal Investigator:Gustavo C. Román, MD, Houston Methodist Neurological Institute

Autism:  Predictive effect of low-thyroid function during the first trimester of gestation

The increasing incidence of Autism Spectrum Disorders (ASD) in the USA and Europe suggests a causal environmental factor.  Neuropathological brain changes in autism are consistent with an alteration of neuronal cortical migration occurring early in gestation (gestational age, GA 8-12 weeks).  Maternal thyroid hormones are critical for neuronal migration.  Thyroid function depends on appropriate iodine content in the diet; also, numerous environmental factors affect thyroid function.  A large number of anti-thyroid compounds are present in many natural and man-made products.  Based on clinical and experimental evidence, Román postulated that maternal hypothyroxinemia (low T4) during the first trimester (GA 8-12 weeks) may adversely affect neuronal migration leading to abnormal cortical formation of brain and cerebellum, resulting in autism.

This research project aims to test the hypothesis that abnormal function tests during pregnancy predict autism by performing appropriate statistical analyses using de-identified data contained in the database from a cohort of mothers and their children [The Generation R Study] in Rotterdam, The Netherlands. It is expected that the incidence of ASD will be significantly higher in the group of cases with early maternal hypothyroxinemia compared to normal controls. 



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


Massachusetts General Hospital
2011

Principal Investigators: Sarabeth Broder-Fingert, MD and Kimberly Kopecky

Hospital Admissions Plans for Patients with Autism at Massachusetts General Hospital

The primary research objective is to expand and study the outcome of a quality improvement project known as "Autism Care Plans (ACPs).” The investigators hypothesize that the use of ACPs will improve the in-hospital experience for patients with autism and their families. On paper, the ACP is a template for caregivers of patients with autism to fill out prior to hospital admission. The ACP documents the patient's primary modes of expressive and receptive communication, social and pragmatic considerations when preparing for patient hospitalization, and relevant sensory/perceptual issues. The investigators will be evaluating pre and post-hospitalization caregiver satisfaction after these templates have been utilized in the inpatient setting.

The ACP for patients with autism strives to ensure 1) appropriate and efficient patient care, 2) patient and family satisfaction with hospital performance and services, 3) reduced adverse outcomes in the inpatient setting and 4) cost effectiveness. The ACP attempts to achieve the above goals using a three-pronged approach. The first element of the ACP is to enhance communication between patient and doctor. The second element of the ACP attempts to make autistic patients as comfortable as possible within the unfamiliar and often unpredictable hospital environment. The third element of the ACP involves extensive provider education and outcome analysis.


Massachusetts General Hospital



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



The Prince’s Foundation for Children & the Arts, London, UK
2012-2013

Relaxed Performances Project

As highlighted in a number of recent high-profile news stories in the UK, there is a real and urgent need for more awareness and understanding of autism as well as a concerted effort to welcome and accommodate young people with autism as audience members in theatres across the UK. A recent development in the UK is activity and interest in increasing arts engagement for young people with special needs including autism and other sensory, communication and learning disorders through the programming of ‘Relaxed Performances’. Relaxed Performances are designed to have a less formal, more supportive atmosphere to reduce anxiety levels. This can be achieved by adapting the performance in a number of ways including changing lighting and special effects to accommodate sensory sensitivities and training theatre staff in how to work with children with special needs. The Prince’s Foundation for Children & the Arts, in partnership with the Society of London Theatre and the Theatrical Management Association, plan to research and develop a best practice model to share with all theatres across the UK and beyond to create a sustainable route into theatre for this new audience. This grant will support the presentation of ‘Relaxed Performances’ in theatres across the UK and these performances will be presented under one umbrella scheme which will support the development, production, marketing, presentation, and evaluation of the performances over the course of one school calendar year. A comprehensive research program will measure the impact of the project both during and beyond the project period. Ultimately, the aim is to provide access to creative, safe and inspiring public theatres for children with special needs and their families.

The Prince’s Foundation for Children & the Arts

Click here to read the press release from the Theatrical Management Association



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.



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.

David Tesini, DMD, MS



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



Yale University , Child Study Center , New Haven , CT
2007-2009

Principal Investigator: Fred Volkmar, MD


Undergraduate Education in Autism (Co-funded with the Lurie Family Foundation)

Since 1984, the Child Study Center has conducted a Yale College seminar course on autism and related conditions. This grant supports the expansion of that course, which over 800 students have participated in over the years. As part of this course Yale College students attend a weekly 90-minute seminar on autism led by Dr. Fred Volkmar and Dr. Ami Klin. Students also spend three to four hours per week in a field placement at the Benhaven School working with significantly behaviorally and developmentally challenged students. The seminar portion of the course is designed to cover topics in diagnosis, treatment, genetics, and research with each meeting led by a different Yale faculty member under the supervision of Drs. Volkmar and Klin. Students are typically drawn from diverse backgrounds but usually include one or two siblings of a child with autism, pre-med and pre-law as well as psychology students.

Child Study Center, Yale University


 
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