WHO WE ARE

The mission of AGENDA is to improve outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism research, and by strengthening collaborations among organizations representing genetically-defined disorders associated with autism.

MEMBERS

The Autism Science Foundation’s mission is to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. ASF also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

The mission of the Angelman Syndrome Foundation is to advance the awareness and treatment of Angelman syndrome through education and information, research, and support for individuals with Angelman syndrome, their families and other concerned parties. We exist to give all of them a reason to smile, with the ultimate goal of finding a cure.

Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of people with autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.

Bridge the Gap – SYNGAP Education and Research Foundation (501(c) 3) is a non-profit organization whose mission is to serve, educate and fund research for families coping with the effects of SYNGAP1 mutations. 

Bridge the Gap-SYNGAP mission is to improve the quality of life for people affected by SYNGAP1, provide family support, accelerating research and raising awareness so that every family and every child with SYNGAP1 can provide information that can guide us to a cure.

Dup15q Alliance provides family support and promotes awareness, research and targeted treatments for chromosome 15q11.2-13.1 duplication syndrome. 

Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.

DYRK1a Syndrome

DYRK1A Syndrome US is non profit 501c3, tax exempt organization with a main purpose of improving the quality of life for those affected by DYRK1A Syndrome. Through support, education, research and collaboration we are working to improve family life, daily living and clinical care for those with DYRK1A Syndrome. In doing so we also improve the lives of their caregivers and their families.  People with this mutation experience Microcephaly, Developmental Delay, Intellectual Disability, Speech delay, Seizures, Autism, Feeding difficulties, Behavioral differences, Vision Abnormalities

The FamilieSCN2A Foundation is an organization created by parents of children diagnosed with Epilepsy and Autism as a result of a change in the SCN2A gene.

Our mission is to improve the lives of those affected by SCN2A disorder through clinical research, effective treatments, public awareness, early detection, patient advocacy, and family support.

Founded in 1994, FRAXA is a nonprofit, tax-exempt organization based in Newburyport, Mass. Solely committed to finding a cure for fragile X, FRAXA has funded more than $25 million in biomedical research, yielding discoveries that are changing the lives of families coping with fragile X.

 

Along with funding research, FRAXA runs scientific meetings, advises pharmaceutical companies large and small, and provides education on college campuses, community settings, and international conferences.

GRIN2B Foundation

GRIN2B Foundation is a parent-run organization dedicated to furthering research on the GRIN2B gene and providing support and education to the small, but growing community of individuals and families impacted by a GRIN2B diagnosis.

It is the mission of the Phelan-McDermid Syndrome Foundation to improve the quality of life of people affected by PMS worldwide by providing family support, accelerating research and raising awareness.

To accomplish this mission, there are specific values that we believe in and will use to justify whether what we do is in the best interests of those affected by Phelan-McDermid Syndrome. Those values are respect, compassion, community, and stewardship.

Project 8p Foundation

Project 8p Foundation is a 501(c)(3) non profit organization established to accelerate the discovery of treatments for chromosome 8p disorders with a translational research program and a standard of care to empower meaningful lives in a unified community today.     People with genetic mutations on chromosome 8P show”  Global Developmental Delays, Intellectual disabilities, Seizures (epilepsy), Autism, Apraxia (Speech problems) Sensory processing disorder Motor planning difficulties Visual conditions Growth deficiency Feeding and digestive challenges High (hypertonia) and low (hypotonia) muscle tones Musculoskeletal issues such as hypermobility (lax joints), Mild craniofacial differences and Sleep disorders

The mission of the Rett Syndrome Research Trust (RSRT) is to encourage and support scientific research that will lead to effective treatments and, ultimately, a cure for Rett syndrome, a severe neurological disorder that afflicts more than 350,000 girls and women around the world, including at least 16,000 in the U.S.

International Rett Syndrome Foundation

At Rettsyndrome.org, our mission is to accelerate full spectrum research to cure Rett syndrome and empower families with information, knowledge, and connectivity. We advocate and raise awareness about Rett syndrome so the scientific and medical community, policymakers, educators, caregivers, and the general public can more thoroughly know, understand, and be motivated to help the research efforts and individuals living with Rett syndrome on a daily basis.

SETBP1 Society

SETBP1 Society was originated and fueled by parents with children with SETBP1 disorder. Their mission is to provide support to individuals with SETBP1 disorder and their families, to promote discussion and fund research, and to bring awareness and education to the public.

Simons Searchlight is on a quest to accelerate the genetic science of autism and related disorders. We want more answers. We want more progress. We are a partnership of leading scientists, researchers, and families. Simons Searchlight believes the only way to make meaningful advances is to do it together. Families know the steps they have taken on their journey and how their lives have been affected. Scientists know how to transform that knowledge into the most cutting edge research.

The Simons Variation in Individuals Project (Simons VIP) is an online community and research initiative.

 

We provide a platform to partner families and researchers to better understand over 30 genetic changes (genomic variants) associated with autism and developmental delay.

The SynGAP Research Fund was incorporated in 2018 in California to improve the quality of life of SynGAP1 patients through the research and development of treatments, therapies and support systems.

The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.

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SCIENTIFIC ADVISORS

Shafali Spurling Jeste, M.D.

Dr. Shafali Jeste is Associate Professor in Psychiatry, Pediatrics and Neurology at the David Geffen School of Medicine at UCLA. She is a behavioral child neurologist specializing in autism and related neurodevelopmental disorders. Dr. Jeste’s research is focused on the use of novel electrophysiological biomarkers to better define early predictors of autism spectrum disorder (ASD) and to define more homogeneous, brain-based subgroups within the autism spectrum in order to inform treatment targets.

Audrey Thurm, Ph.D., Clinical Psychologist

Audrey Thurm, Ph.D. is a staff scientist in the Pediatric and Developmental Neuroscience Branch. She is a licensed child clinical psychologist who specializes in autism spectrum disorder and other neurodevelopmental disorders.

Jeremy Veenstra-VanderWeele, M.D.

Dr. Veenstra-VanderWeele is a child and adolescent psychiatrist who uses molecular and translational neuroscience research tools in the pursuit of new treatments for autism spectrum disorder (ASD) and pediatric obsessive-compulsive disorder (OCD).

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© 2017 by the Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism.  All rights reserved.