CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile
CSNK2A1 Foundation

@csnk2a1org

We are focused on finding a cure for OCNDS & ensuring affected individuals have the opportunities and supports necessary for happy & full lives #ocnds #csnk2a1

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linkhttps://linktr.ee/csnk2a1 calendar_today26-02-2018 14:53:03

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CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

📊 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

📊 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
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🎒✏️ 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

🎒✏️ 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
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🎉 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

🎉 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
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🌍 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

🌍 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
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"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

"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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

💚💬 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

💚💬 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🌟 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

🌟 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
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📣 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

📣 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
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📢 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

📢 Hosting your own event?

We’ll create a custom flyer just for you! Email us at info@csnk2a1foundation.org 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
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🌟 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

🌟 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🚨 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

🚨 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

📢 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

📢 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🌟 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

🌟 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🎥 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

🎥 Missed Denver? Watch the 2025 Connect + Collaborate Conference from home! 💙 Closed Captioning is available in all OCNDS languages. For help, email beth@csnk2a1foundation.org. 

Watch here 👉 loom.ly/n8EUbaI

 #OCNDS #BoundlessPossibilities #CSNK2A1
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

📣 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

📣 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🚨 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

🚨 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🗓️ 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

🗓️ 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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

📄 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

📄 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 info@csnk2a1foundation.org!

✅ Register now: loom.ly/UNhby70
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

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

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
CSNK2A1 Foundation (@csnk2a1org) 's Twitter Profile Photo

🌟 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

🌟 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