SETBP1 Society

President of SETBP1 Society and Parent Advocate for SETBP1-HD

[SETBP1 Society @setbp1]

🚴‍♂️ SETBP1Strong Grant for the Million Dollar Bike Ride is Now Open for Applications! 🔔

Grant Amount: $68,544

Letter of Interest (LOI) Deadline: Friday, September 20th by 8:00 p.m. EST

View the RFA for the SETBP1-HD pilot grant at https://t.co/oGOJYmqDQZ!

[SETBP1 Society @setbp1]

4/4 Higher rates for neonatal feeding difficulties
and febrile seizures were reported for individuals with SETBP1-HD. Additional prominent characteristics included sleep, vision, and gastrointestinal issues, hypotonia, & high pain tolerance. #SETBP1Strong @phenotypicvariation

[SETBP1 Society @setbp1]

1/4 Just published: SETBP1 haploinsufficiency and related disorders clinical and neurobehavioral phenotype study - reports #SETBP1 neurodevelopmental disorder information from the SETBP1 registry in Simons Searchlight!
Link: https://t.co/3smHtYnybI

[SETBP1 Society @setbp1]

3/4 While restricted interests & repetitive behaviors
present challenges, a relative strength was observed in social motivation w/in both cohorts. Individuals with SETBP1-RD reported a risk for heart issues &
compared to SETBP1-HD greater risks for orthopedic and somatic issues.

[SETBP1 Society @setbp1]

🚀 Exciting news! We've launched our SETBP1-HD Microgrant Program to support innovative research. Calling all researchers interested in neurodevelopmental disorders, transcription factor regulation, disease mechanisms, & drug repurposing. LOIs due Aug 2nd! https://t.co/P2qlmONLQs

[SETBP1 Society @setbp1]

🚴‍♂️🌟 Check out our Top 10 SETBP1Strong Million Dollar Bike Ride Fundraisers! 🌟 We're so proud of our top fundraisers supporting SETBP1 research! Your dedication is making a huge impact. 📷 Join us: https://t.co/IpIWGpIbIX

#SETBP1Strong

[SETBP1 Society @setbp1]

🌟 Thrilled to share the latest in our 𝐒𝐄𝐓𝐁𝐏𝟏 𝐆𝐞𝐧𝐞𝐭𝐢𝐜𝐬: 𝐁𝐢𝐭𝐞-𝐒𝐢𝐳𝐞𝐝 𝐁𝐫𝐞𝐚𝐤𝐭𝐡𝐫𝐨𝐮𝐠𝐡𝐬 🧬series! @jordan_whitlock dives into the Clinical delineation of SETBP1 haploinsufficiency disorder paper. https://t.co/FuOXh3BXsX #SETBP1Strong

[SETBP1 Society @setbp1]

Our inaugural piece, crafted by @jordan_whitlock, a distinguished member of our MSAB, sets the stage for what’s to come! 🔍 𝗕𝗿𝗲𝗮𝗸𝗶𝗻𝗴 𝗻𝗲𝘄 𝗯𝗼𝘂𝗻𝗱𝘀 𝗶𝗻 𝗦𝗘𝗧𝗕𝗣𝟭 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗶𝗻 𝗮𝗻 𝗲𝗮𝘀𝘆 𝘁𝗼 𝗱𝗶𝗴𝗲𝘀𝘁 𝘄𝗮𝘆 #SETBP1Strong #childhoodapraxiaofspeech

[SETBP1 Society @setbp1]

🌟 Exciting News Alert -𝐒𝐄𝐓𝐁𝐏𝟏 𝐆𝐞𝐧𝐞𝐭𝐢𝐜𝐬: 𝐁𝐢𝐭𝐞-𝐒𝐢𝐳𝐞𝐝 𝐁𝐫𝐞𝐚𝐤𝐭𝐡𝐫𝐨𝐮𝐠𝐡𝐬 🧬Introducing our latest initiative for the SETBP1 Community! Dive into digestible & insightful summaries of groundbreaking research articles on SETBP1. https://t.co/7TqFQaJaZP

[SETBP1 Society @setbp1]

#ShineYourSearchlight✨ Share your medical history with @s_searchlight! This will help you and researchers get a more accurate picture of what it means to have [genetic syndrome name] over time. Go to your dashboard to complete your survey: https://t.co/isb7bEa1A0 #SETBP1Strong

[Simons Searchlight @s_searchlight]

#ShineYourSearchlight✨ Have you uploaded your genetic lab report to your @S_Searchlight dashboard? Researchers need specific details in your genetic lab report to learn more about your genetic condition. Go to your dashboard + share your medical journey: https://t.co/opCMbNwx00

[SETBP1 Society @setbp1]

Welcome @jordan_whitlock, PhD to our #SETBP1 Society MSAB! We are thrilled to have her passion and expertise in the areas of patient-specific genomic sequencing, cellular and animal models, and drug repurposing and research plan development on our team! https://t.co/Tc5Eb3IwNx

[SETBP1 Society @setbp1]

#ShineYourSearchlight✨ Not enough is known about SETBP1 haploinsufficiency and related disorders. Join our search for answers by signing up for #SimonsSearchlight and help us grow our community in 2024. Go to https://t.co/ehUvT94nbH to sign up for FREE! #SETBP1Strong

[SETBP1 Society @setbp1]

A Huge Congrats to @greatcait and her @B_RADLAB @UofSC as the Grant Awardee of this year’s #SETBP1Strong #MDBR Grant Award! Thanks to everyone that contributed physically, financially, and/or emotionally to help make this happen!
https://t.co/OKPohzJLM4

[SETBP1 Society @setbp1]

Double your donation! Up to $125 donation matching for supporting SETBP1 Society on #GivingTuesday! Check out or donate to one of our SETBP1 Fundraisers at https://t.co/D86Cqz1f9R or visit https://t.co/bf2UaEdRNZ! #SETBP1Strong

[SETBP1 Society @setbp1]

💲Funds raised from our #SETBP1Strong Team's participation in the Million Dollar Bike Ride have funded 7 SETBP1 grants totaling $331,819 so far!
This year, who will be awarded our next SETBP1Strong MDBR pilot grant for $88,740?
LOIs are due by Friday, September 15th!

[SETBP1 Society @setbp1]

#SETBP1Strong Million Dollar Bike pilot grant program is now OPEN for Letters for Interest (LOIs)! Apply at https://t.co/aSNHzyi50w by Sept 15th!

[UPenn Million Dollar Bike Ride by ODC @MDBRide4Rare]

🚨🚨🚨The 2023 #MDBR Pilot Grant Program is now open and accepting Letters of Interest (LOIs)! Apply here today: https://t.co/WgjkaoP3cO LOIs are due Sept. 15th. Grants are open to the international research community. 🔬🔬🔬 #raredisease #rfa #pennmedmdbr2023 #rarediseasegrants

[SETBP1 Society @setbp1]

Happy Father's Day to all of our SETBP1 community dads, granddads, and male caregivers! We see you and appreciate all you do!
#SETBP1Strong

[SETBP1 Society @setbp1]

We're using the power of partnership to collect biospecimens across rare neurodevelopmental disorders! Learn more about the @combinedbrain Biorepository Roadshow: https://t.co/SJMaLTAf1K