📊 Simons Searchlight has just released updated registry data! ✅ Top Reported Symptoms: • 96% — Language Delay • 90% — Intellectual Disability / Developmental Delay • 68% — Low Muscle Tone • 57% — Constipation • 27% — Autism Learn more: loom.ly/JdiEx10

🎒✏️ Back-to-school shopping? Save 20% at Minted.com using code FUNDRAISECSNK2A1 — and Minted will donate 10% back to the CSNK2A1 Foundation! 💚 Shop now and give back! loom.ly/_-RX6f4 #BackToSchool #MintedFundraiser #CSNK2A1Foundation #OCNDS

🎉 Exciting news! Dr. Danielle Caefer joins our Scientific Advisory Board! A leader in phosphoproteomics & CK2 biology, her work is advancing our understanding of OCNDS. 💡 Welcome, Dr. Caefer! 💙 #OCNDS #RareDiseaseResearch #WomenInScience #CK2 #Neurodevelopment

🌍 Boundless Possibilities: Run, Walk & Roll for OCNDS 🌍 📅 October 11–12, 2025 💻 Register here: loom.ly/UNhby70 *Need a custom flyer to promote your event? Contact us & we will make one for you!* 💙💚 #BoundlessPossibilities #OCNDS #RunWalkRoll

"Investing in the OCNDS community is not just an act of compassion; it's an investment in human potential." 💚💙 That powerful insight comes from teen writer Carley Faith Callahan. Her words will stick with you. Don’t miss it. 📖 Read now: loom.ly/IZ7dct8

💚💬 Join NORD® for Navigating School & Beyond: Advocacy Tips for Rare Youth and Young Adults, a free virtual community conversation. 🗓 Thursday, August 21, 2025 🕕 6–7 p.m. ET 📲 Register now: loom.ly/b2rJwmo #RareDisease #RareYouth #Advocacy #NORD

🌟 Upcoming Webinar: “Internal Struggles: Navigating Anger, Shame, and Guilt” 📅 Monday, August 25th ⏰ 12 PM ET ✅ Register for this Zoom webinar now: loom.ly/EylYBNs Or scan the QR code on the flyer! #Caregivers #ProjectWellCAST #CaregiverSupport #OCNDS #CSNK2A1

📣 Don't forget! Register for our #BoundlessPossibilities Run, Walk & Roll by September 22 to snag your exclusive event T-shirt 🎽 ✅ Sign up now: loom.ly/UNhby70 #OCNDS #CSNK2A1 #HopeIntoAction #TimeIsNow

📢 Hosting your own event? We’ll create a custom flyer just for you! Email us at [email protected] with your event details, and we’ll send you a personalized flyer to help you spread the word. ✅ Don’t forget to register: loom.ly/UNhby70 #ocnds #csnk2a1

🌟 Your Voice Matters! 🌟 Have you been impacted by the CSNK2A1 Foundation? We’d love to hear from you! 📝 Leave a review or read what others are saying: 👉 loom.ly/2I3CbdU #csnk2a1 #ocnds

🚨 DON’T MISS OUT! 🚨 Registration is open for our 2025 #BoundlessPossibilities Run, Walk & Roll on October 11–12! ✅ Sign up today: loom.ly/UNhby70 #ocnds #csnk2a1 #hopeintoaction #timeisnow #RunWalkAndRoll #funrun

📢 New Resource: Family Planning & OCNDS Authored by Anna Madden (UPenn Genetic Counseling, JumpStart/GCSX), this guide explains OCNDS inheritance w/ visuals, genetic report examples & reproductive planning options. 👉loom.ly/k36d-xY #OCNDS #Genetics

🌟 Welcome Dr. Michael Boland to the CSNK2A1 Foundation SAB! He brings expertise in stem cells, epigenetics & therapy development, and leads translational research at UPenn/CHOP ENDD. Learn more here: loom.ly/whzZIkE

🎥 Missed Denver? Watch the 2025 Connect + Collaborate Conference from home! 💙 Closed Captioning is available in all OCNDS languages. For help, email [email protected]. Watch here 👉 loom.ly/n8EUbaI #OCNDS #BoundlessPossibilities #CSNK2A1

📣 Be part of something BIG this October 11–12! Join our worldwide OCNDS community for the #BoundlessPossibilities Run, Walk & Roll — an event to raise awareness and fund research for OCNDS. ✅ Register today: loom.ly/UNhby70

🚨 Action Needed: Updated Zoom Links 🚨 Updated links below ⬇️ 📅 Saturday, September 13th at 8:00 AM PT 👉 New registration link: loom.ly/RgnC-vI 📅 Sunday, November 16th at 8:00 AM PT 👉 New registration link: loom.ly/NU_z72c

🗓️ SAVE THE DATE! 🗓️ Join us on Saturday, September 13th, 08:00 AM Pacific Time (US and Canada) Saturday, September 13th, for our bi-monthly OCNDS Family Zoom Meeting hosted by our Parent Advisory Board. Register here: loom.ly/RgnC-vI

📄 Get your Boundless Possibilities event flyer today! Want to promote your walk, run, or roll with friends and family on October 11–12? We’ll create a flyer with all your event details—just email [email protected]! ✅ Register now: loom.ly/UNhby70

Today we celebrate Owen! His mom shared: "Owen was only diagnosed last year. He loves the water and one of his huge achievements is that he has recently learnt to ride a bike." Way to go, Owen! #milestonemondays #inchstones #ocnds #csnk2a1 #hopeintoaction #timeisnow

🌟 Meet Alexandra Lee! 🌟 Longtime volunteer, advocate, and now an intern with CSNK2A1 Foundation. Inspired by her sister’s OCNDS diagnosis, she’s turning passion into impact. 💙 Learn more about Alexandra here: loom.ly/Ckw3Sc4 #OCNDS #RareDiseaseAdvocate #MeetTheTeam