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

 

Autism Science Foundation

ASF_Stacked_logo[2].jpg

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.

ADNP Kids Research Foundation

F9630311-EDD1-45BE-9395-BB52FD1FDA00 (1)

The ADNP Kids Research Foundation is the world's first non-profit organization to fund research, publish papers and promote awareness for ADNP Syndrome. Their mission is to advance the awareness and understanding of ADNP Syndrome / Helsmoortel – Van Der Aa Syndrome (ADNP) by supporting research for treatments and drug development, increasing awareness and scientific understanding, promoting individualized specialty care and protocol, supporting families and providing information to help all individuals with ADNP realize their full potential and have a better quality of life.

Angelman Syndrome Foundation

ASF%252520Logo-Tag_4C%252520(1)_edited_e

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

as-weblogo.png

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.

6F21A345-FCD6-4ACF-B6A8-150D02D41368.png

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.

cureSHANKlogo_smallArtboard 1_0_5x-2.png

It is the mission of CureSHANK to accelerate the development of cures and treatments for Shankopathies through research. The founders of CureSHANK are parents of children affected by Phelan-McDermid Syndrome [a shankopathy disorder], who believe that a better life for our children is within reach. CureSHANK works towards this goal through funding targeted research and holding scientific meetings to connect diverse stakeholders.

2020 dup15q alliance logo transparent.pn

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-logo-US.jpg

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

FamilieSCN2A Foundation

fscn2a-weblogo.png

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.

FOXG1 Research Foundation

foxg1_research_foundation_logo_reverse_t

FOXG1 is one of the first and most critical genes in brain development. Formerly called Brain Factor 1, it’s a transcription factor that “turns on” proteins needed for other genes to work properly. Neuroscientists believe that understanding Foxg1 could help solve many brain disorders affecting millions of people, including autism, schizophrenia, Alzheimer’s, brain cancers, and more.

FRAXA Research Foundation

fraxarf-weblogo.png

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

Screen Shot 2020-09-02 at 2.37.32 PM.png

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.

ID Define

IDefine%20Logo.jpg

The mission of ID Define is to cure Kleefstra Syndrome and in doing so, target intellectual disabilities as a whole.  In order to do so, the organization will support research programs and therapeutics targeting KS, creating and improving standardization of clinical care, and community outreach.

International Rett Syndrome Foundation

RettSyndrome.orgWTagLogo.CMYK.png

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.

Malan Syndrome Foundation

Malan%20Syndrome%20Foundation11-01.jpg

The mission of the Malan Syndrome Foundation is to improve the lives of individuals and families affected by Malan syndrome in the global community through support, outreach and research.  -Provide a broad network of support to families affected by Malan syndrome and help advance access to a diagnosis.  -Promote knowledge development, awareness and sharing of information.  -Explore research pathways to treatments and cures, as well as enhance understanding of Malan syndrome and related disorders.

PACS1 Syndrome Foundation

logo for campaign.png

The goal of the PACS1 Syndrome Research Foundation is to

Children with PACS1 syndrome will be dependent life-long on caregivers. They have intellectual disabilities, global developmental delays, epilepsy, autism, and significant language impairments. All children with PACS1 Syndrome have the same exact change in the PACS1 gene making it extremely unique and more easily curable relative to other genetic conditions.

Phelan-McDermid Syndrome Foundation

PMSF_ORG_Logo_Horz_Solid.jpg

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 Logo Vector Export High Rez J

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

Rett Syndrome Research Trust

RSRT.jpg

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.

Ring14

logo_Ring_USA%20small_transparent.png

In our effort to improve the quality of life for those affected by the rare neurodevelopmental disorders of the 14th chromosome, such as Ring14 Syndrome, we commit to promoting and funding critical research, raising awareness of these rare disorders, and providing thoughtful support to this community.

SETBP1 Society

Screen Shot 2020-09-02 at 2.44.35 PM.png

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

0002_Searchlight_Logo_wSIMONS_wTag_RGB.j

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 SynGAP Research Fund

5A3CF52A-BA80-49D6-983F-2F1A0155A143.jpe

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.

Tuberous Sclerosis Alliance

TSalliance.jpg

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