CSNK2A1 Foundation

🌟 Save the Date! 🌟 On February 28, 2026, join us for Rare Disease Day as we celebrate the OCNDS community and rare disease warriors worldwide. 💙 #RareDiseaseDay #OCNDS #CSNK2A1Foundation #RareDiseaseAwareness #BoldBreakthroughs

💬 Sibling Voices Matter The Sibling Panel Summary from our July Conference is now live on our website! 👉 Read the summary here: loom.ly/GbqdPVE 💙 Thank you to the siblings who shared their voices and helped move this conversation forward.

📱 New Research Opportunity for Families EVOCA is a new communication app helping researchers better understand how non- and minimally-speaking individuals communicate. 🗣️ For individuals with fewer than 100 spoken words, ages 6–35 📩 Questions? Email: nddlab@northeastern.edu

🌍💙 Mark Your Calendars: April 5th is International OCNDS Awareness Day! 💚🌍 🗓️ When: April 5th 📢 How You Can Help: ✔️ Wear green and blue to show your support ✔️ Apply for a proclamation or light up a landmark for OCNDS. Learn how here: loom.ly/T1irHIw

📣 REMINDER: Research Opportunity for Families – Speech & Language Study 📺 Watch this presentation and learn how your family can help shape the future of OCNDS research: loom.ly/O9Ox8ck To learn more and to sign up to participate, please email Miya.stjohn@mcri.edu.au.

📺 Have you watched it yet? Our webinar with Citizen Health is on YouTube! Watch to learn more and feel empowered to take the next step. 🎥 Watch here: loom.ly/hFusPt0 🔗 Sign up here: loom.ly/Be7FFg0 Let’s keep the momentum going! 💙💚 #OCNDS #CSNK2A1 #Citizen

🌟 Your Voice Makes a Difference! 🌟 Sharing your experience helps us grow, reach more families, and continue driving #BoldBreakthroughs. 💙💚 📝 Leave your own review 👉 loom.ly/2I3CbdU #CSNK2A1 #OCNDS #BoldBreakthroughs #GreatNonProfits #YourVoiceMatters

📣 New Resource Available! Simons Searchlight released a new resource, “Navigating Menstruation: Support for Caregivers of Individuals with Disabilities.” 👉 Learn more and access the resource here: loom.ly/JFSs6pY #OCNDS #CSNK2A1 #BoldBreakthroughs

💬 A Reflection from Our Internship Program This quote shows how impactful it can be for interns to engage in meaningful research while contributing to the OCNDS community. Thank you, Alexandra! 💙💚 #OCNDS #CSNK2A1 #BoundlessPossibilities #InternSpotlight #RareDiseaseResearch

🗓️ Save the Date! On Monday, April 6, 2026, the CSNK2A1 Foundation will host our Drive for Diagnosis Charity Tournament benefitting all OCNDS research programs. 📅 Save the date — April 6, 2026 ⛳ El Caballero Country Club ✨ Fun. Purpose. Progress. All in one day.

With love, from Carly (teen advocate) My best friend Harper has a rare condition called OCNDS. I made this video because I love her. And because research can make a real difference—for Harper and for kids like her all over the world. 🌍✨

As we close 2025, reflecting on what happens when a rare disease community decides to build together. This was a year of growth, readiness & real progress for us. As we step into 2026, our focus is clear: Bold Breakthroughs. Read our full Year in Review: loom.ly/9DmULFE

📅 Save these Dates in 2026: ✨ Feb 28 – Rare Disease Day ✨ Apr 5 – International OCNDS Awareness Day ✨ Apr 6 – Drive for Diagnosis Golf Classic ✨ Oct 10 & 11 – Run, Walk & Roll for OCNDS ✨ Dec 1 – Giving Tuesday #OCNDS #RareDisease #BoldBreakthroughs #CSNK2A1Foundation

🔬 New Research Explained is Live! This research focuses on a rapid method for studying CK2 activity and how its parts interact, helping move the science forward more efficiently. 👉 Read the Research Explained here: loom.ly/dV5PTFU

💙💚 Last chance to share your voice! The Gene Therapy Community Poll for OCNDS families closes January 16. Your feedback will help guide future research and resources for the community. 📣 Take the poll here: loom.ly/lms0UGQ

🎉 And the winner is… 🎉 Thank you to everyone who participated in our Gene Therapy Poll! We randomly selected a lucky winner to receive a $100 gift card, and the winner has been contacted 🏆 🗓️ The survey closes January 16. 👉 Fill it out here: loom.ly/RfqBIj0

🎉 For the month of December in honor of Giving Tuesday, our community came together and raised over $130,000 for OCNDS research! To every family, friend, donor, and advocate who shared, gave, and believed with us, THANK YOU. Because of you, real science is moving forward.

🎉 We’re excited to introduce Koko, our newest intern! She’s a fourth-year anthropology student at UCLA with a passion for disability advocacy and genetic counseling 💙💚 Learn more about Koko here: loom.ly/O02Apk0

💬 A Reflection from Our Internship Program This perspective highlights how hands-on experience and mentorship can shape future leaders in science and patient advocacy. Thank you, Monica! 💙💚 #OCNDS #CSNK2A1 #BoundlessPossibilities #InternSpotlight #RareDiseaseResearch

🗓️ SAVE THE DATES! 🗓️ Join us throughout 2026 for our bi-monthly OCNDS Family Zoom Meetings hosted by our Parent Advisory Board. Together, we’ll discuss successes, challenges, and all things OCNDS. Register on our website: loom.ly/m369eMs