{"id":242,"date":"2023-10-02T16:47:45","date_gmt":"2023-10-02T20:47:45","guid":{"rendered":"https:\/\/simonsvipcms.wordpress.com\/?page_id=242"},"modified":"2025-01-16T06:16:36","modified_gmt":"2025-01-16T11:16:36","slug":"ourcommitment","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/about\/ourcommitment\/","title":{"rendered":"Our Commitment"},"content":{"rendered":"

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Mission Statement<\/strong><\/h2>\n

In order to create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must come together.\u00a0Simons Searchlight<\/span>\u2018s mission is to shed light on these disorders by collecting high-quality, standardized natural history data and building strong partnerships between families, researchers, patient advocacy communities and industry.<\/p>\n

Simons Searchlight is a project supported by the Simons Foundation, through the Simons Foundation Autism Research Initiative (SFARI).\u00a0<\/strong><\/p>\n

Mission Overview<\/strong><\/h2>\n

Simons Searchlight is an online international research program, building an ever growing natural history database, biorepository, and resource network of over 185 rare genetic neurodevelopmental disorders. By joining our community and sharing your experiences, you contribute to a growing database used by scientists worldwide to advance the understanding of these conditions. Through online surveys and optional blood sample collection, we gather valuable information to improve lives and drive scientific progress. Families like yours are the key to making meaningful progress.<\/span><\/p>\n

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Our team and advisory committee<\/h3>\n

The Simons Searchlight <\/span>team<\/span><\/a> comprises scientists, doctors, data analysts, genetic counselors, research coordinators, product developers, and communication specialists. We are here to make your research participation as easy as possible. Additionally, our <\/span>Community Advisory Committee<\/span><\/a> guides us in centering our participants’ voices in all that we do, ensuring that our study adapts to the diverse needs of our community.<\/span><\/p>\n

We all work together to learn about your condition and the issues you face, and to help find answers to improve your clinical care and management. We believe we can improve the care of individuals today by sharing your collective experience while supporting scientists to develop additional treatments and tools for the future.<\/span><\/p>\n

You, and families like yours, share valuable information and experiences, helping leading geneticists and scientists around the world to improve the lives of people living with rare genetic neurodevelopmental disorders. These researchers can also invite families to participate in their research studies in the future.<\/span><\/p>\n

People with genetic diagnoses, their families, and scientists play equal parts in this journey.<\/span><\/p>\n

Long-Term Commitment to Research<\/strong><\/h2>\n

The Simons Searchlight research study has been well-established for over fifteen years and is supported with long-term funding by the Simons Foundation. The Simons Searchlight team is made up of many talented staff members and is led by two principal investigators: Wendy Chung, M.D., Ph.D., and Cora Taylor, Ph.D.<\/span><\/p>\n

Chung is a world-renowned doctor and geneticist. She has authored over 600 peer-reviewed scientific articles and 75 scholarly chapters and won several awards as a doctor, researcher, and professor. Read her full bio<\/a>.<\/span><\/p>\n