Established by a combined gift from the C.J.L. Charitable Foundation and the NLM Family Foundation, Dana-Farber’s Neuro-Inclusive Oncology Care and Empowerment Program provides specialized cancer care for adults with intellectual and/or developmental disabilities (IDD).
A new Yale study has found a promising target for treating the brain fog that can follow COVID-19 and offers new insight into a hypothesis about the origin of Alzheimer’s disease. Funding for Dr. Brian Hafler’s research was provided in part by the H. Eric Cushing Foundation, the Nancy Lurie Marks Family Foundation, and the C.J.L. Charitable Foundation.
The Simons Foundation Autism Research Initiative (SFARI) recently announced the release of phenotypic and genetic data from the Autism Inpatient Collection (AIC), a cohort of more than 1,500 youth participants ages 4 to 20 years old who were hospitalized in one of six child psychiatry units in the United States. The AIC, supported by SFARI and the Nancy Lurie Marks Family Foundation, aimed to engage these individuals, many of whom meet recently proposed criteria for ‘profound autism’ (autism characterized by intellectual disability or minimal language that requires high levels of supervision and support) as they are substantially underrepresented in datasets derived from outpatient or community settings.
Philadelphia Eagles owner and NLMFF trustee, Jeffrey Lurie, is donating $50 million to the Children’s Hospital of Philadelphia and Penn Medicine to create a joint initiative of autism spectrum disorder research. The $50 million gift that will launch the Lurie Autism Institute (LAI) is the largest single donation to U.S. academic medical centers focused on autism research across the lifespan. One of LAI’s main goals is to combine the work of CHOP and Penn and aid researchers in painting a broader picture of autism’s effects over a lifetime.
The Simons Foundation Autism Research Initiative (SFARI) recently announced the recipients of its 2024 Pilot and Pilot Progression Awards. The Nancy Lurie Marks Family Foundation (NLMFF) will provide co-funding for six of the awards.
“In partnership with the Simons Foundation, the Nancy Lurie Marks Family Foundation is pleased to support these outstanding cutting-edge projects at this pivotal time for autism research,” says NLMFF Director and Chief Scientific Officer Clarence Schutt.
Research funded by the NLM Family Foundation and led by Rutgers University-New Brunswick researchers suggests that tiny facial movements – too slight for the human eye to notice – could help scientists better understand social communication in people with autism. Published in Frontiers in Psychiatry, the study found that while individuals with autism express emotions like everyone else, their facial expressions may be too subtle for the human eye to detect.
When you have a family member with autism, even everyday outings can present challenges. Autism Welcoming℠ makes everything—from day-to-day errands to special occasions—easier. Through Autism Welcoming trainings, businesses learn how to welcome individuals and families, creating new customers and a more inclusive community for all. Visit the Autism Welcoming website to find a directory of certified businesses, as well as information about the certification process: https://autismwelcoming.org/
MeiMei Liu and the Autism and Grief Project were featured on Buffalo’s NPR station, WBFO NPR.
Since 2019, the Boston Symphony Orchestra has hosted sensory-friendly concerts with the goal of making performances more accessible, and this year’s Holiday Pops Sensory-Friendly Concert delivered a special experience for the attendees of the sold-out show.
With support from the NLM Family Foundation, Harvard Medical School has launched the Adult Autism Health Resources initiative. Focused on improving autism care and the lives of autistic adults and their families, the project aims to educate clinicians, caregivers, and self-advocates in leading meaningful change across health care systems.
Creators of Autismandgrief.org, a new website for adults with autism, their families, and professionals announced that 20,000 visitors have tapped into the website’s resources during its first year, including hundreds of clergy, social workers, and nurses who have accessed education focused on providing competent support.
Alex LaMorie serves on the advisory board for autismandgrief.org, a new website for adults with autism who are grieving, their families, and professionals in supportive roles. The site was underwritten by the NLM Family Foundation and developed by Hospice Foundation of America, self advocates, and autism and grief experts.
Grief is a Spectrum Too, an animated video by and for adults with autism, is the winner of documentary short category by the Museum of the Moving Image (MoMI), which will honor autistic media-makers with at its annual Marvels of Media Awards ceremony and exhibit beginning on March 30, Hospice Foundation of America (HFA) announced. Part of the new website autismandgrief.org, Grief is a Spectrum Too features adults on the spectrum describing their reactions to a variety of profound loss experiences. The website, launched in September 2022, was developed by HFA, with funding from the NLM Family Foundation.
Additional insights can help guide interventions that can assist individuals in processing and understanding their surroundings better.
AutismandGrief.org, a new website to help adults, families, clergy, and other professionals understand, validate, and support the grief experiences of adults with autism launched on September 19, 2022, Hospice Foundation of America (HFA) announced. Funded by the NLM Family Foundation, AutismandGrief.org seeks to foster a healthy understanding of grief and loss for autistic adults. More information can be found in the HFA’s press release.
Support from the NLM Family Foundation for the Massachusetts Consortium for Pathogen Readiness (MassCPR) is acknowledged in a May 2022 Science Immunology article titled, “Antibodies induced by ancestral SARS-CoV-2 strain that cross-neutralize variants from Alpha to Omicron BA.1.” More information about this NLMFF grant can be found here: “Support to the MassCPR to address the COVID-19 Pandemic.”
The Humanitarian Crisis in Ukraine and the Autism Community
Many of us are deeply concerned about the war and continuing humanitarian crisis in Ukraine. This situation can be especially challenging for Ukrainian families with disabilities including autism. We share the following links and resources to increase awareness of the plight of families and individuals with autism during this crisis and provide more information about how to offer assistance.
The Leadership Education in Neurodevelopmental Disabilities (LEND) Program at the E.K. Shriver Center/UMass Chan Medical School in Worcester, MA prepares professionals, persons with disabilities, and family members to influence policy and clinical practice on behalf of children with developmental disabilities and their families. The program is now accepting applications for the 2022-2023 academic year through the online LEND application system. The deadline is June 1, 2022. For additional information and to access the online application program, visit: https://tinyurl.com/ShriverLENDApplication
The work of NLMFF-supported researcher, Dr. Natalie Russo, is featured in the Daily Orange (Syracuse University’s student news) today. The article describes the work of the Center for Autism Research and Electrophysiology Lab at Syracuse University (founded by Russo in 2011) which focuses on understanding how people with autism sense and perceive the world around them, and how that may or may not be different from people without autism. The lab offers free evaluations and diagnoses for both children and adults, which is a way for the lab to serve the local community.
In 2020, the NLM Family Foundation made a grant to the Massachusetts Consortium on Pathogen Readiness (MassCPR) to support its crucial work addressing the COVID -19 pandemic and pathogenic disease. This funding has been used to support the highest priority COVID-19 related activities, particularly those with promise for novel diagnostics, therapeutics, or vaccines. With support from the NLM Family Foundation, the research group published a paper titled, “Membrane fusion and immune evasion by the spike protein of SARS-CoV-2 Delta variant” in the December 10, 2021 issue of Science.
Jacob Hooker, PhD, takes the lead in autism research at the Lurie Center and plans to leverage philanthropy to make bold breakthroughs.
With support from the NLMFF, the Hospice Foundation of America (HFA) is developing online and printed resources to support adults with autism who are grieving. HFA is inviting autistic adults aged 18+ with artistic skill to submit a logo design for the project. The chosen artist/designer will be profiled on the website and will receive an honorarium of $350 and a plaque recognizing their contribution. Submissions must be made via email to: autism@hospicefoundation.org The email must include name, age, mailing address, phone number and email address.
Submission details:
https://hospicefoundation.org/hfa/media/Files/Logo-design-request-for-submissions-final-draft.pdf
The New Jersey Autism Center of Excellence (NJACE) hosts a variety of educational webinars covering topics geared toward helping autistic people, families, educators, clinicians, researchers, and the greater community. NJACE also highlights the lived experiences of autistic people to promote respect, understanding, and accommodations.
All webinars can be accessed by visiting the NJACE YouTube Channel.
The Simons Foundation Autism Research Initiative (SFARI) and the Nancy Lurie Marks Family Foundation (NLMFF) are pleased to announce that they joined efforts to generate induced pluripotent stem cells (iPSCs) from blood samples of participants in Simons Searchlight. With an investment of $450,000 from each organization, SFARI and NLMFF intend to generate iPSCs from 100 individuals over the next year. They plan to possibly generate another 100 iPSCs during a second year of the collaboration. iPSCs will be generated by the New York Stem Cell Foundation (NYSCF) and stored in the SFARI biorepository at Infinite Biologics. Samples will be available for request by researchers worldwide through SFARI Base for a nominal fee.
The Hospice Foundation of America (HFA) has been awarded a five-year grant by the Nancy Lurie Marks (NLM) Family Foundation that will focus on the needs of bereaved adults with autism.
The Autism Bereavement Project will involve a team of professionals, including Margaret Lynn Beaudoin-Kobb, MDiv, a staff chaplain at The Hospital of the University of Pennsylvania and Kenneth Doka, PhD, Senior Bereavement Consultant to Hospice Foundation of America, who is known internationally for his work around disenfranchised grief.
The outcome of the project will be a website that provides resources and information on grief and bereavement to adults with autism; their families and guardians; clergy, health and social service professionals, and counselors; and the autism community at large. Continuing education will also be offered through the website.
HFA projects the website will be launched in the spring of 2021.
For information about the project, contact Amy Tucci or Cindy Bramble, project manager, of HFA at 202-457-5811 or info@hospicefoundation.org.
A sensitive and reliable new protocol for assessing social deficits in animal models of autism and certain psychiatric conditions is expediting the search for effective treatments. Developed by University at Buffalo researchers, the new protocol is described in a paper published in Nature Protocols. The work was funded by the National Institutes of Health and the Nancy Lurie Marks Family Foundation.
The INSAR Board of Directors, along with the Student & Trainee Committee, have decided to make the entire 2020 INSAR Institute Series’ recordings available to both members and non-members. All six sessions are now available for replay online.
For individuals with conditions such as autism, unfamiliar social interactions can produce negative emotions such as fear and anxiety. A new study from Scripps Research reveals how two key neural circuits dictate the choice between social approach and avoidance.
The NLM Family Foundation (NLMFF) today announced a $1 million grant to the Massachusetts Consortium on Pathogen Readiness (MassCPR) to support its crucial work addressing the COVID -19 pandemic and pathogenic disease. MassCPR’s rapid response to the Coronavirus crisis and creation of clinical/research collaborations have been remarkable.
The grant is for support of the research and clinical priorities of the MassCPR under the direction of the Dean of the Faculty of Medicine at Harvard Medical School and the MassCPR Steering Committee. This funding will be used to support the highest priority COVID-19 related activities, particularly those with promise for novel diagnostics, therapeutics, or vaccines.
The goal of the MassCPR is to develop and invest in both the research process and supporting infrastructure to address the current global COVID-19 pandemic, and better position the Consortium for potential future outbreaks.
The initial efforts of the MassCPR are aimed at elucidating the basic biology of the SARS-CoV-2 virus and the pathogenesis of the resulting disease, developing new diagnostic tools, vaccines, and antiviral therapies, creating and using animal and other model systems, understanding disease epidemiology, and leveraging clinical expertise to improve medical management.
To learn more about MassCPR, please visit: https://masscpr.hms.harvard.edu/
To learn more about NLMFF’s COVID-19 Response Grants, please visit: https://www.nlmfoundation.org/grant/nlmff-covid-19-response-grants/
New findings from the Children’s Autism Metabolome Project (CAMP) Study, a 1,102 subject study of the metabolism of children with ASD, published in Autism Research
The NLM Family Foundation has made grants to the following organizations in response to the COVID-19 crisis. The purpose of these grants is to rapidly deploy resources to organizations in Massachusetts working directly with communities that are significantly impacted by the coronavirus outbreak.
The Arc of Massachusetts
Beth Israel Deaconess Medical Center
Boston Health Care for the Homeless
Combined Jewish Philanthropies
The Greater Boston Food Bank
Harvard Medical School
Massachusetts Advocates for Children
Massachusetts General Hospital and the Lurie Center for Autism
The NLM Family Foundation has compiled a list of links to articles and websites offering information about supporting individuals with autism and related disabilities during a COVID-19 outbreak.
Northeast Arc announced the winners of the third year of The Arc Tank competition, The Arc Tank 3.0, which was created to positively disrupt conventional methods of providing services to persons with disabilities. The winners were selected by a panel of judges who heard their pitches at an event held Nov. 19 at the John F. Kennedy Presidential Library. The winners are:
• AutismWorks – Developing Talent of the Future, Technical Certification and Computer Programming Training – Submitted by Interactive Media Institute of San Diego, CA
• BEAT Rockers App– Speech Practice Mobile App for Children with Speech and Development Disability – Submitted by Bridging Education and Art Together of Long Island, NY
• Creating Opportunities Through Entrepreneurial Ecosystems – Submitted by Celebrate EDU of Boulder, CO
• 4- A Club: Autism, Aging, Alexa, Access) – Submitted by New England Yachad of Brookline MA
• Fan Favorite chosen by the Arc Tank audience: L.A. Lab for Entertainment Professionals with Disabilities – Submitted by RespectAbility of LA and Rockville, MD
Each of the 2019 Arc Tank 3.0 winners addresses a crucial challenge currently facing the disability community.
An op-ed titled, “The Challenge of Aging with Autism” is now online on the Commonwealth Magazine website. The op-ed is written by Jo Ann Simons, CEO of Northeast Arc and Elizabeth Zwick, Director of Community Relations at the NLM Family Foundation and highlights the upcoming Arc Tank 3.0 competition, which funds pioneering and positively disruptive ideas to enhance the lives of persons with disabilities.
NLMFF Career Development Awardee, Elizabeth Torres, Ph.D., recently published a new textbook, “Objective Biometric Methods for the Diagnosis and Treatment of Nervous System Disorders.” The textbook provides a new and unifying methodological framework, introducing new objective biometrics to characterize patterns of sensory motor control underlying symptoms. Its goal is to radically transform the ways in which disorders of the nervous system are currently diagnosed, tracked, researched and treated. This book introduces new ways to bring the laboratory to the clinical setting, to schools and to settings of occupational and physical therapy.
The Heller School for Social Policy and Management invites applications and nominations for a faculty position in Disability Policy. Brandeis seeks a scholar whose research and teaching apply to issues of disability policy. The specific focus within this broad field is open, and applicants with expertise in areas such as health, poverty, employment, housing, civil rights, and intersectionality are welcome to apply. The Heller School is looking for candidates who are committed to the highest standards of scholarship with a record of funded research and public engagement. They hope to identify a future colleague for whom their tagline, “knowledge advancing social justice,” resonates. The open rank position carries an appointment outside the tenure structure, commensurate with the candidate’s qualifications. Applicants should submit a curriculum vitae and letter of application describing their research, teaching, policy, and practice experience. Review of applications will begin on October 15, 2019; however, applications will continue to be accepted until the position is filled. Questions about the position can be directed to Darren Zinner, PhD, Associate Dean for Academic Personnel (dzinner@brandeis.edu).
In a recent segment of the OA on Air podcast, NLMFF’s Beth Zwick, Program Officer and Director of Community Relations, spoke with Ann Murphy, Senior Vice President of O’Neill and Associates, about the NLMFF’s interest in focusing on Aging with Autism, and about NLMFF’s partnership with the Northeast Arc to support the Arc Tank 3.0 Competition on November 19, 2019. In the podcast, Ms. Zwick and Ms. Murphy discussed the biggest issues facing people aging with autism, and the types of innovative ideas that NLMFF is hoping will come out of the Arc Tank to address the unmet needs of older adults with autism and their families.
NLMFF grantee, Deborah Flaschen, and 3LPlace Life College, a state-approved, residential, post-high school program supported by the NLMFF, were recently featured in the Boston Globe.
NLMFF grantee, Deborah Flaschen, and 3LPlace Life College, a state-approved, residential, post-high school program supported by the NLMFF, were featured in Boston Magazine.
Why are children able to acquire highly sophisticated language abilities without needing to be taught? What are the neurobiological and neurophysiological processes that underpin human speech and language, and how do they go awry in developmental and acquired disorders? Which genetic factors contribute to this remarkable suite of human skills, and are there evolutionary precursors that we can study in their species? A unique course at Cold Spring Harbor Laboratory addressed core questions about the bases and origins of speech and language, through talks, interactive sessions, keynotes, and debates, involving leading experts from a range of disciplines. The full lectures are available to be viewed on the CSHL Leading Strand website.
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