Simons Searchlight

Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data:

[Simons Searchlight @s_searchlight]

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.

[Simons Searchlight @s_searchlight]

🌸 Our Spring 2026 newsletter is here! Explore research updates, scientific outreach, community stories, family resources, and ways to stay connected with Simons Searchlight. 💙

Read now: https://t.co/sNCH7rZziW

#SimonsSearchlight #RareDiseaseResearch

[Simons Searchlight @s_searchlight]

💫 Meet Liz Spitzer, PhD, Co-Founder & COO of the DYNC1H1 Association.

“Find the people that understand this life.” 🩵

In our latest Leading the Way interview, Liz shares her rare disease advocacy journey & hopes for the #DYNC1H1 community.

Read more: https://t.co/AE5e7DMBTV

[Simons Searchlight @s_searchlight]

“Take it one day at a time, and it’s ok to feel all of your emotions.” 💙

Lindsay Allen shares her family’s journey raising Brock, her 17-year-old son with 16p11.2 duplication syndrome.

Read their story: https://t.co/x1GYMPNWyR

#SimonsSearchlight #16p112Duplication

[Simons Searchlight @s_searchlight]

💙 Every person counts, today and over time. Thanks to our amazing community, Simons Searchlight has reached 83,400+ completed surveys! Your participation helps advance research on rare genetic neurodevelopmental conditions. 🧬

Complete pending surveys: https://t.co/opCMbNwx00

[Simons Searchlight @s_searchlight]

🧬💙 Our #SimonsSearchlight genetic counselors review genetic reports, answer community questions, and create lay-friendly resources & genetic condition guides to help families and advance research.

💡 https://t.co/c0Z7XGbxcy

#RareDiseaseResearch #CareForRare

[Simons Searchlight @s_searchlight]

🎉 Major milestone for Simons Searchlight — we’ve reached 10,000+ registered participants with genetic variants worldwide! 🌍🧬

Thank you to every family and individual whose continued participation powers research, deepens understanding, and helps shape future discoveries. 💙✨

[Simons Searchlight @s_searchlight]

📢📽️ Have you watched our video that walks you through the registration steps for joining Simons Searchlight?

If you're new to our community or need a refresher on how to sign up for research, this video is for you.

Learn more: https://t.co/K80PuzUBiQ

[Simons Searchlight @s_searchlight]

💜 Today we celebrate #MEF2CAwarenessDay w/ our advocacy partners & #MEF2C families around the world! We have 264 participants w/ MEF2C-related syndrome in #SimonsSearchlight.

🌟 Explore gene info, reports, & resources:
https://t.co/ymlTrBX2Bz

#RareDiseaseResearch #CareForRare

[Simons Searchlight @s_searchlight]

💜 Today we celebrate #MED13LAwarenessDay w/ our advocacy partners + the entire #MED13L community! We have 285 participants w/ MED13L-related syndrome in #SimonsSearchlight.

🌟 Explore gene info, data, resources, & more:
https://t.co/iQmfF2OdRy

#CareForRare #RareDiseaseResearch

[Simons Searchlight @s_searchlight]

We want to hear from our community 💙 As young people w/ rare genetic conditions reach adulthood, families face important decisions & your experience can help guide others.

Share your story in our Understanding Pathways to Adulthood survey:
https://t.co/tT05MWIYFp

#CareForRare

[Simons Searchlight @s_searchlight]

💜 Today we celebrate #ATRXSyndromeAwarenessDay with ATRX Research Alliance!

177 individuals with #ATRX-related syndrome are part of #SimonsSearchlight 🧬

🌟 Find gene info, data reports & support resources: https://t.co/GdIjBCfHgJ

#ATRXAwareness #ATRX #RareDiseaseResearch

[Simons Searchlight @s_searchlight]

🌟 Did you know #SimonsSearchlight has a Community Advisory Committee (CAC)?

They help shape research, surveys & campaigns—ensuring participant voices are heard 💙

Meet the members 👇
https://t.co/uaibUfmwgh

#RareDiseaseResearch #CareForRare #PatientAdvocacy

[Simons Searchlight @s_searchlight]

Great few days at the American Academy of Neurology Annual Meeting 2026! 🧠

The Simons Searchlight team was proud to exhibit and connect with clinicians and researchers about advancing rare genetic research.

💙 Families: your participation drives discovery.

#AAN2026 #Neurology

[Simons Searchlight @s_searchlight]

💜 Today we celebrate #5pDeletionSyndromeAwarenessDay with @CDCresearch & 5P- Society! 94 individuals w/ 5p deletion (Cri-du-chat) are part of #SimonsSearchlight 🧬

🌟 Explore resources, reports & research:
https://t.co/SdEvAWjEyk

#5pminusawareness #RareDiseaseResearch

[Simons Searchlight @s_searchlight]

💙 “This genetic condition is a part of you but is not the whole you.”

The White family shares their journey w/ TAOK1-related syndrome—participating in research to help bring answers & hope to future families. 🧬

Read their story 👇
https://t.co/nwuDFySuu0

#TAOK1 #CareForRare

[Simons Searchlight @s_searchlight]

🎉 Celebrating 10 years of @SPARKforAutism. Wendy Chung—PI of SPARK & Simons Searchlight—highlights 10 ways SPARK has advanced autism research. 🧠

🔗 Watch: https://t.co/EdXPEA18HO

#AutismResearch

[Simons Searchlight @s_searchlight]

📢 Updates to Simons Searchlight genetic community webpages.

Our pages for 184 genetic conditions are continually updated—with new data and gene guides to explore. 🧬

💡 Check out the latest resources: https://t.co/LDQSrI5kip

#SimonsSearchlight #RareDiseaseResearch

[Simons Searchlight @s_searchlight]

🧬 Did you know? 80% of rare diseases have a genetic cause.

#SimonsSearchlight studies 160 gene changes + 24 CNVs linked to rare neurodevelopmental disorders.

On #NationalDNADay, we celebrate the impact of genetic research.

💡 https://t.co/c0Z7XGbxcy

#Genetics #DNA

[Simons Searchlight @s_searchlight]

📊 Research participation update.

Since the start of 2026, nearly 750 new participants with genetic variants have joined #SimonsSearchlight. 🧬

Thank you to our patient advocacy partners for helping grow this community. 💙

🔗 https://t.co/aamYNlNmyM
📈 https://t.co/chFaJUSuMu

[Simons Searchlight @s_searchlight]

🧬🌐 Celebrating #ASH1LAwarenessDay with @Care4ASH1L!

36 participants with ASH1L-related syndrome are part of #SimonsSearchlight 💙

📚 Explore research, data, and resources: https://t.co/6DEjGiFzSf

#GeneticResearch #RareDisease #CareForRare #ASH1L