?? Stay Informed with Simons Searchlight! Our latest newsletter is here, featuring the newest updates and insights from our research program. This edition focuses on “Strengthening Partnerships: A Year of Support and Growth With Patient Advocacy Communities”—celebrating collaboration, shared achievements, and the power of community. ???? ?? https://lnkd.in/eVx3-AbA Let’s continue driving progress together!
Simons Searchlight
研究服务
New York，New York 349 位关注者
Online research program for 185+ rare genetic neurodevelopmental disorders. Join, share, and fuel scientific progress.??
关于我们
Simons Searchlight is an international online research program dedicated to building a comprehensive natural history database, biorepository, and resource network for over 185 rare genetic neurodevelopmental disorders. By joining our community and sharing your experiences, you contribute to a global research database that empowers scientists to advance understanding and drive progress in these conditions. Through online surveys and optional blood sample collection, we gather valuable data to improve lives and accelerate scientific discovery. Families like yours are key to meaningful progress. Our team is led by two principal investigators: Wendy Chung, M.D., Ph.D., a world-renowned geneticist and researcher with over 600 scientific publications, and Cora Taylor, Ph.D., a licensed clinical psychologist with extensive experience working with rare neurogenetic communities. Dr. Taylor specializes in diagnostic evaluations for children with developmental and rare genetic conditions and conducts research on neurodevelopmental disorders. Simons Searchlight is funded by the Simons Foundation.
- 网站
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https://www.simonssearchlight.org/
Simons Searchlight的外部链接
- 所属行业
- 研究服务
- 规模
- 11-50 人
- 总部
- New York，New York
- 类型
- 非营利机构
- 创立
- 2010
地点
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主要
获取路线
US，New York，New York
Simons Searchlight员工
动态
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?? Have you checked out the new Event Planning Toolkit, developed by Simons Searchlight and Global Genes? This comprehensive resource is designed specifically for patient advocacy members and incorporates valuable insights and feedback from our advocacy communities and leading experts. ?? This guide includes practical resources, templates, and insights to help you plan and execute impactful conferences. From budgeting to on-site operations, this toolkit has you covered. Let’s create extraordinary events that drive change and connect our community! Explore the toolkit now and get started on your next big event: https://lnkd.in/eggQiZDj ?? #EventPlanning #PatientAdvocacy #Toolkit #RareDiseaseResearch #CareForRare
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The Simons Searchlight team came together from across the country for our annual team meeting! We reflected, brainstormed, strategized, and set big goals for an incredible year ahead in rare genetic neurodevelopmental disorder research. ???? None of this would be possible without you—our incredible participants and community. ?? Thank you for trusting us as your research partner and inspiring us with your dedication. We are honored to do this meaningful work every day. Together, let’s make 2025 a year of remarkable progress! ????
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#SimonsSearchlight joins people nationally in support of #EpilepsyAwarenessMonth! ?? Of our total participants who contributed seizure history information, 29% of individuals with a copy number variant (164 of 569) and 46% of people with a single-gene condition (860 of 1879) experience seizures. ?? Learn more about Simons Searchlight resources and how to get involved in our research program: www.SimonsSearchlight.org. #RareDiseaseResearch #GeneticsResearch #EpilepsyAwareness #SeizureAwareness
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?? Did you know when you complete research surveys for Simons Searchlight you get rewarded? ?? Your participation in our research is invaluable! When you contribute your information through online surveys, you're helping researchers worldwide better understand your rare genetic condition. As a big thank you, we offer online rewards. Now we have more options available for redeeming your rewards! Follow these simple steps to redeem your rewards: 1?? Sign in to your Simons Searchlight account at https://lnkd.in/gDvKdC2E 2?? Click on the 'Rewards' tab 3?? Look out for an email with your unique redemption link and select your reward option 4?? Provide your name and email at checkout to receive an email with your selected gift codes We also made a step-by-step video: bit.ly/HowtoClaimRewards ?? Not part of Simons Searchlight? Learn more about our research program here: www.SimonsSearchlight.org.
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?? Reminder for our global community! If you speak English, Spanish, French, or Dutch and have a genetic condition on our study list, you can participate in #SimonsSearchlight. Excitingly, more languages will be available for participation in 2025! Your involvement supports and advances the understanding of rare genetic neurodevelopmental conditions worldwide. Ready to make an impact? Learn more: https://lnkd.in/eXWdbdje #RareDiseaseAwareness #PatientAdvocacy #GlobalCommunity
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Today, we’re recognizing #GeneticCounselorAwarenessDay! At Simons Searchlight, our dedicated genetic counselors play a vital role in guiding families through their unique journeys, offering support, resources, and answers along the way. Thank you to our incredible team for all they do to empower our genetic communities! ?? ?? ?? Explore our research program and discover valuable resources at SimonsSearchlight.org! #ResearchEducation #RareDiseaseResearch #PatientAdvocacy #GeneticCounselors
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???? Meet the Shacklock-Aylings Family! Alice Shacklock-Ayling is the proud mother of 4-year-old Lucy, who is living with 7q11.23 duplication syndrome. Alice shares her gratitude for research: “I’m so glad there is research being undertaken about this syndrome so that we can ensure Lucy has the best possible chance of a happy and healthy life.” ?? Discover their story and the importance of ongoing research: https://lnkd.in/eEzF9rmJ Learn more about patient advocacy community support: https://lnkd.in/e3A78vnx #CareForRare #RareDiseaseAwareness #RareDiseaseResearch #SimonsSearchlight
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Stay connected with #SimonsSearchlight! ?? Sign up for our quarterly e-newsletter to receive the latest updates on research programs, educational resources, insightful articles, and timely announcements—all designed to keep you informed and connected. Subscribe today at SimonsSearchlight.org!
Simons Searchlight | Driven by science. United by hope.
https://www.simonssearchlight.org
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?? Exciting Grant Opportunity for Simons Searchlight Communities! ?? The Simons Foundation Autism Research Initiative (SFARI) is now accepting applications for its new RFA, "Conference Support for Rare Neurodevelopmental Disorder Communities Participating in Simons Searchlight." This funding opportunity is designed to support Patient Advocacy Group (PAG) family conferences specifically for groups within the Simons Searchlight community. ?????? Whether your group is just starting or has been established for years, this grant can boost the research aspect of your conference including scientific presentations and in-person research opportunities for families. Funding Overview: ?? Tiers: $2,500, $7,500, and $15,000 ?? Eligibility: Applicants must be PAGs for Simons Searchlight Gene/CNV groups that use Simons Searchlight as their primary registry and plan to hold conferences between January 2025 and February 2026. ?? Application Deadline: March 4, 2025. For more information on the application process, timeline, and upcoming informational webinar, visit SFARI’s website: https://lnkd.in/eA77ixEk. Simons Searchlight is funded by the Simons Foundation. #AutismResearch #RareDiseaseResearch #GeneticsResearch
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