The NLM Family Foundation was established in 1977 by Nancy Lurie Marks. At this time, autism was a condition which received little public attention and attracted scant interest or funding in the scientific, medical and educational arenas. The vision and hope of the founder was to undertake a long-term commitment to gain knowledge about autism; to help individuals and families with autism; to bring autism openly into the public eye; and to encourage the free exchange of information about autism. The pathfinding journey was launched to support emerging researchers in this nascent field, and to begin to put autism on the map of social and scientific awareness. Early grants to pioneering researchers and centers in autism and neuroscience included:
- Support for the neurobiological investigations of the brain in autism by Dr. Margaret Bauman, Pediatric Neurology Unit, Massachusetts General Hospital, Boston, MA;
- Support for the Yale Child Study Center, New Haven, CT focusing on comprehensive evaluations, diagnosis, and intervention for children with disabilities, as well as support for research projects in autism at the Center;
- Support for special research related to autism conducted by the late Dr. Norman Geschwind, the James Jackson Putnam Professor of Neurology at Harvard Medical School and Chairman of the Department of Neurology at the Beth Israel Hospital, Boston, MA;
- Establishment of the Nancy Lurie Marks Chair in Developmental Neuroscience and Director of the Volen National Center for Complex Systems at Brandeis University, Waltham, MA;
- Support of neuroscience research and development at the Department of Neurology, Beth Israel Hospital, Boston, MA and support of a symposium on “The Emotional Motor System”, organized by Dr. Gert Holstege (Department of Anatomy and Embryology, University of Groningen, The Netherlands), Dr. Richard Bandler (Department of Anatomy, University of Sydney, Australia), and Dr. Clifford Saper (Department of Neurology, Harvard Medical School/ Beth Israel Hospital, Boston, USA). The symposium sparked the publication of the book, The Emotional Motor System, edited by Holstege, Bandler, and Saper, which represents an overview of the conference proceedings on the emotional motor system.
- Support for the development of The Autism Research Foundation (TARF) led by Dr. Margaret Bauman, Boston, MA . TARF is a nonprofit organization dedicated to researching the neurological underpinnings of autism and other related developmental brain disorders.
- Support for the League School of Boston, modeled after the League School of Brooklyn, NY under the direction of Dr. Carl Fenichel, devoted solely to individuals with Autism Spectrum Disorders.
- Support for the Benhaven School residential and educational program for individuals with autism in Connecticut.
In addition, the Foundation established an early history of giving to Boston area community and biomedical organizations including the Combined Jewish Philanthropies; The Dana Farber Cancer Institute where the Foundation provided funds to establish the Nancy Lurie Marks Research Fund, the Morris John Lurie Endowment Fund, the Morris John Lurie Conference Room, and the Lurie Biomedical Library; Boston Symphony; Facing History and Ourselves; Museum of Fine Arts; area university forums in education/public policy on autism and alternative/augmentative communication in autism; and progressive community living projects for individuals with developmental disabilities.
Emergence of the Modern Mission of the Foundation
In the mid 1990s, the Foundation set up its headquarters in Chestnut Hill, Massachusetts under the directorship of H. Eric Cushing. Recognizing the need to establish a public charitable organization focused on accelerating research into the biological causes of autism, the Foundation played a key role as an early sustainer and capacity-builder of the National Alliance for Autism Research (NAAR). In 2007, NAAR merged with Autism Speaks to create the largest publicly-supported organization for advancing autism research and advocacy in the United States.
Expansion of the NLMFF Science Program
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 (“Boston Clubs”) 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.
As the Foundation grew over the years and more resources were allocated to the science program established by H. Eric Cushing, the leadership of the scientific program was passed in 2001 to Clarence Schutt, Ph.D., then a Professor of Chemistry at Princeton University. Several years later, in 2006, the Foundation moved its headquarters to its present site in Wellesley Hills, Massachusetts, which provided a much larger office and conference space that could accommodate a growing grantmaking program and frequent scientific symposia and think tanks. In 2008, Dr. Schutt assumed the role of Director and Chief Scientific Officer, and focused his efforts on approaching autism from a fundamental scientific perspective and grounding the NLMFF Science Program in the basic biomedical sciences. Dr. Schutt’s Directorship resulted in an increased emphasis on multi-institutional Program Projects and training the next generation of autism researchers through Career Development Awards and Post-Doctoral Fellowships.
Establishment of a Multidisciplinary Clinical, Research, Training, and Advocacy Program
In 2009, Nancy Lurie Marks and the Nancy Lurie Marks Family Foundation made a gift to the Massachusetts General Hospital (MGH) to establish the Lurie Center for Autism, located in Lexington, Massachusetts (USA). The Lurie Center is an integrated and multidisciplinary clinical, research, training and advocacy program dedicated to treating individuals with autism spectrum disorders and other developmental disorders across the lifespan. In addition to clinical care, cutting-edge translational research, advocacy and public policy analysis, the Center is committed to providing training and clinical experience for a new generation of medical doctors to meet the comprehensive needs of those with autism. The center builds upon the clinical practice at LADDERS, a program of the MassGeneral Hospital for Children which for many years provided expertise in neurology, developmental pediatrics, gastroenterology, psychiatry and psychopharmacology for children with autism.
Commitment to Advocacy, Social Policy, and Public Awareness
To advance the cause of autism in the public arena, the NLM Family Foundation has focused its advocacy and public awareness grantmaking efforts on capacity-building of public organizations, nourishing progressive advocacy networks, educating the public to help increase society’s understanding of autism, expanding community opportunities inclusive of individuals with autism, and examining public policy issues impacting families with autism.
The Foundation provided a grant to Brandeis University to help create the Lurie Institute for Disability Policy and endow a professorship at the Heller School for Social Policy and Management. The Lurie Institute for Disability Policy is dedicated to improving the lives of people on the autism spectrum, as well as people with other disabilities, across the lifespan through innovative social policies that foster inclusion into the mainstream of society. The Lurie Institute conducts cross-disciplinary research on disability policy in the United States with a special emphasis on autism, focusing on the lifespan of persons with disabilities and their families, and analyzing policy options for achieving the broadest integration of persons with disabilities into the mainstream of U.S. society, including their own voices in such analyses. Through research, policy development, education, and public engagement, the Lurie Institute provides a comprehensive approach to addressing disability issues across the lifespan.
The Foundation has also provided long-term support for Massachusetts Advocates for Children’s Autism Special Education Legal Support Center which provides training, technical assistance, and advocacy services necessary to ensure that children with autism receive equal educational opportunities. The Center provides community-based workshops for parents, educators, and medical professionals regarding legal rights and range of service options available for children with autism; provides a hotline to give legal and technical assistance to families of children with autism, prioritizing underserved families from diverse ethnic and linguistic communities; trains attorneys to increase representation of low-income students with autism to ensure that children receive legally mandated special education services; and provides information to the media, the legislature, and other policy makers regarding changes necessary to ensure children with autism receive services that reflect their potential. The Center prioritizes systems change – through legislative, regulatory, administrative or legal remedies – to have the greatest impact affecting the most children. Its legislative victories include The Autism IEP Act, an important provision of the Massachusetts special education law that includes protections for students who have a diagnosis of autism. Additionally, the Autism Center helped to establish the Children’s Autism Medicaid Waiver, providing intensive in-home services for children on the autism spectrum. The Center’s work led to the enactment of Act to Improve Teacher Training in Augmentative and Alternative Communication, ensuring that special education teachers are adequately prepared to educate children who are nonverbal or have limited speech.
The Foundation has also provided long-term support to the Autism Insurance Resource Center, a program of New England INDEX, which provides information and support to the public about medical insurance coverage for autism treatment under a law, An Act Relative to Insurance Coverage for Autism (ARICA).
The NLM Family Foundation also developed a web-based resource, Autism around the Globe, aimed at raising global public awareness of autism, increasing understanding of how cultural variations affect how autism is viewed and experienced, sharing information about innovative community efforts and projects in autism being developed in different parts of the world, providing a directory of international autism resources, developing supportive networks of families and professionals in autism communities around the world, and encouraging international research collaboration in autism-related fields. It is our hope that this resource will foster a greater understanding of how autism is experienced across cultures and an increase in the exchange of knowledge and resources between countries and regions.
Emphasis on Community-based Social Programs
After observing that middle-aged and older adults with autism often lack access to age-appropriate recreational opportunities, and many recreation providers lack the expertise to appropriately serve this growing population, in 2016, the NLM Family Foundation created a Recreation and Community Relations Program focused on addressing these needs. The NLM Foundation selects specific recreation providers with whom to partner in order to create enjoyable, satisfying programs for older adults. “The Joy of Golf” Program for adults with autism and New England Yachad Bowling program were among the very first NLM-sponsored recreational programs for adults with autism. The Foundation also works with professional development organizations in the recreation sector to expand expertise in the field.
In the decades since the NLM Family Foundation began its work, autism has gained an increasing level of attention from the public, from governmental agencies and amongst the scientific and social-educational communities. While so much remains to be discovered about the nature of autism, the educational, social, and life issues for individuals and families with autism, and for society’s understanding of autism, the field has certainly grown enormously due to enhanced public awareness and more widespread support of autism research.
With the dedicated involvement of extended family, trustees and professionals, the Nancy Lurie Marks Family Foundation continues to build upon its founder’s original vision and unwavering commitment to the cause of autism.
For further information on the NLM Family Foundation’s grants and current initiatives, please click on the Grants section.