Simons Searchlight
@s_searchlight
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Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
USA
Joined July 2014
What is #SimonsSearchlight? A #research study looking at genetic changes associated with #autism and other #neurodevelopmental disorders. Over 200 #genetic changes (CNVs and genes) are included in this #study.
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📊 Research update! From April to June, 554 new individuals w/ a genetic condition joined Simons Searchlight. We’re now connected w/ 8,607 participants w/ a genetic diagnosis & counting! . Thanks to our families & amazing advocacy partners! 💙. Learn more:
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🧬💛 We’re proud to join @CureCLCN4 in celebrating #CLCN4AwarenessWeek!. Thanks to their support, 61 individuals with CLCN4-related syndrome are part of the #SimonsSearchlight community. 🔗 #CLCN4 #RareDiseaseResearch #CareForRare
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🚨New data alert! Updated Simons Searchlight participant data has been released to support rare genetic research. A huge thanks to families like yours who are driving discoveries and advancing research! 💛🧬. 💡 Your participation is making a real impact:
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📊 New SFARI RFA! Researchers can apply for funding to analyze existing autism & NDD datasets—including Simons Searchlight data. A great chance to deepen insights using rich, ready-to-use resources. Learn more: #RareGenetics #RareDiseaseResearch.
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🌍 If you speak English, Dutch, French, German, Italian, Portuguese or Spanish and have a genetic condition on our study list, you can participate in #SimonsSearchlight!. Learn more: #RareDiseaseResearch #GeneticsResearch #CareForRare #PatientAdvocacy
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🌟 Meet our summer interns! 🌟. Welcome Juanita (Cornell Univ., pre-MD/PhD) & Katie (Bucknell Univ., future genetic counselor) to #SimonsSearchlight! They’re passionate about helping families living with rare genetic conditions. We’re lucky to have them! 💙. #FutureOfGenetics
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🎉🧬 Today we join @cureSYNGAP1 & @SyngapNetwork to celebrate #SYNGAP1AwarenessDay!. We’re proud to have 198 participants with #SYNGAP1 -related syndrome in Simons Searchlight. 🔗 Explore data, guides & more: #RareDiseaseResearch #PatientAdvocacy
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💙💛 Diagnosed with a rare genetic condition? Our resource, "Navigating Life After a Rare Genetic Diagnosis," offers tools and support for your journey. 🧬. Explore the guide and share with your community: �. #RareGenetics #GeneticCounseling #FamilySupport.
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Sharman and her son Andrew first joined the SPARK study, then Simons Searchlight to better understand the rare #NLGN3 variant they share. Now, Andrew advocates for housing, jobs & support for autistic adults. 💙 Read their story:
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🎉 Celebrating #DDX3XAwarenessDay with @ddx3x!. We’re proud to have 16 participants with DDX3X-related syndrome registered in #SimonsSearchlight. 🧬 Explore resources, research, & ways to join: #DDX3X #CareForRare #RareDiseaseResearch #PatientAdvocacy
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RT @SimonsFdn: Our @AutismBrainNet program has released genetic data for 23 new brain samples, with 273 samples available in total. Learn m….
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🎥 What does “pathogenic” or “variant of uncertain significance (VUS)” mean?. In this throwback Ask Simons Searchlight video, former genetic counselors Rebecca & Jamie explain key genetic terms in plain language. 🧬 Watch now!. #SimonsSearchlight #GeneticsExplained
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💛 Parents + Simons Searchlight = Progress. Discover how families like yours drive research, advocacy, and hope for rare genetic conditions. 🎥 Hear from Simons Searchlight families: #RareDiseaseResearch #SimonsSearchlight #HopeInAction #CareForRare
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📚 Explore family-friendly research on rare genetic conditions. The Simons Searchlight Publications page features studies powered by families—great for advocacy, care, and next steps. 🔗 #RareDiseaseResearch #EmpoweringFamilies #PatientAdvocacy
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🧬🦓 Librarey helps rare disease families find resources fast. Built from Sierra Phillips’ guide, it connects families and researchers to speed up treatments. ➡️ Explore now: #RareDisease #DisabilityResources #CareForRare
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🌟 Meet Alejandra, mom of 18-year-old Tomas, who lives with SCN2A-related syndrome. “Trust that time can provide answers to our doubts.”. She shares her story to help others and support research. 💙 #SCN2A #CareForRare #SimonsSearchlight15
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🌸✨ Our Spring 2025 newsletter is here!.Learn how Simons Searchlight keeps your data safe 📊 + get the latest research updates, community stories & resources for rare genetic neurodevelopmental conditions. Read now: #CareForRare #DataPrivacy
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🧬💙 Every person counts today and over time. Simons Searchlight is a long-term research study, and your continued participation helps researchers track changes and make meaningful discoveries across the lifespan. Together, we are making long-term impact possible. Thank you. ✨
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🧬💙 Meet our amazing #SimonsSearchlight genetic counselors! They guide families, build trust, and support long-term research on 185+ rare genetic conditions through surveys & optional blood samples. 💡 Learn more: #CareForRare #PublicHealthGenetics
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🧬💙 Meet our amazing #SimonsSearchlight genetic counselors! They guide families, build trust, and support long-term research on 185+ rare genetic conditions through surveys & optional blood samples. 💡 Learn more: #CareForRare #PublicHealthGenetics
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