CSNK2A1 Foundation

?? Travel Assistance Application for 2025 Connect + Collaborate OCNDS Scientific & Family Conference With the 2025 Connect + Collaborate Conference fast approaching, now is the time to apply for a travel scholarship. If travel costs are a barrier, you may be eligible for assistance. Scholarship awards will be determined based on the total number of applications received and the specific needs of each family. While we cannot guarantee assistance, we encourage families facing financial barriers to apply. ?? Deadline to Apply: April 25, 2025 ?? Travel Scholarship Form: https://loom.ly/dZqNMEU We hope to see you in Denver—apply today! ???? #ConnectAndCollaborate2025 #TravelScholarship #RareCommunity #BetterTogether #OCNDS #CSNK2A1 #BoundlessPossibilities

?? Stronger Together: Join the CSNK2A1 Parent Advisory Board! Collaboration drives change! As a Parent Advisory Board (PAB) member, you’ll work alongside other parents & caregivers to shape resources, support families, and advance research for OCNDS. ?? Why join? ?? Connect with a passionate community ?? Share ideas & create meaningful impact ?? Help guide Foundation initiatives ?? Apply by: April 19, 2025 ?? Apply now: https://loom.ly/LJ4olqo With trust and teamwork, we can create a brighter future—together! ???? #OCNDS #TogetherWeThrive #ParentLeaders #CollaborationMatters #ParentAdvisoryBoard #CSNK2A1 #BoundlessPossibilities

?? New Blog Alert! Science Snapshot: Biomarkers & Their Role in Rare Disease Research ???? We hear about biomarkers all the time in research and drug development, but what exactly are they? In our latest Science Snapshot, @Tierney Baum , PhD, breaks it down for us! Biomarkers are biological molecules that help us monitor, diagnose, and predict disease. From genetic tests for cancer risk to blood sugar levels for diabetes, biomarkers play a critical role in healthcare. But did you know they’re also key to advancing rare disease research? ?? What types of biomarkers exist? (Spoiler: The FDA recognizes 7 types!) ?? How do biomarkers accelerate drug discovery? ?? Why are biomarkers critical for rare diseases like OCNDS? ?? Read the full blog to learn more: https://loom.ly/20Yr0FU #RareDiseaseResearch #Biomarkers #ScienceSnapshot #OCNDS

?? Your Connect + Collaborate 2025 Questions—Answered! Attending Connect + Collaborate 2025 in Denver? We know you might have questions, and we’ve got you covered! ? ?? Why does the hotel require a credit card? ?? What’s included in my registration? ?? When should I arrive? ?? Watch our FAQ video here: https://loom.ly/qyE8-i0 ?? Closed captions are available in all OCNDS languages to ensure everyone stays informed! Watch this video to learn how to enable closed captioning. ?? Or, find answers to these questions and more at this link: https://loom.ly/QRgxYXA We can’t wait to connect, collaborate, and create impact together in Colorado! ???? #ConnectAndCollaborate2025 #BetterTogether #RareCommunity #OCNDS #CSNK2A1 #BoundlessPossibilities

Today is Purple Day, a global initiative to raise awareness about epilepsy. People worldwide wear purple, spark conversations, and host events to support epilepsy awareness. We're proud to partner with the Rare Epilepsy Network (REN) and the Epilepsy Foundation to address epilepsy-related challenges in our community. According to a 2024 Simons Searchlight Quarterly report, 22 out of 81 CSNK2A1 families reported experiencing seizures. Learn more about this report here: https://loom.ly/ID-b_U8 #OCNDS #CSNK2A1 #TimeIsNow

Help advance research on OCNDS! ?? Long-term participation is crucial for unlocking new insights that drive progress in medical research and improve clinical care worldwide. By completing the updated Annual Medical History Survey (AMHS), you’re helping to ensure your family’s story continues to shape a brighter future for the community. The AMHS now covers symptom severity and treatment effectiveness, making it more impactful for all participants. Plus, you can earn gift cards for your contributions! ?? If you’ve completed the AMHS online before, you can now preview your earlier answers, streamlining yearly updates and making it easier to build on what you’ve shared. Visit your participant dashboard to see if the AMHS is assigned to you and complete it today: https://lnkd.in/gDvKdC2E Want to learn more about the importance of completing your AMHS? Watch this video: https://lnkd.in/gVWnqs67 Not part of Simons Searchlight? Learn more: https://loom.ly/M6CwWsw #RareDiseaseResearch #CareForRare #SimonsSearchlight #OCNDS #CSNK2A1 #BoundlessPossibilities

?? Your Voice Matters: Join the CSNK2A1 Foundation Parent Advisory Board! Are you a parent or caregiver of a loved one with OCNDS? This is your opportunity to connect, lead, and create change within our community! Applications are now open for the 2025-2027 Parent Advisory Board (PAB). ? Why Join? Hear from current PAB member Claire Whitehill: "Being part of the Parent Advisory Board is so rewarding because we are able to advise the Foundation on the needs of the community and the priorities from the parents’ perspective. It is a pleasure to know that our work is helping the community to get to know each other, learn from our experience, and to ensure that nobody feels alone on this journey." ?? Apply by: April 19, 2025 ?? Submit your application today: https://lnkd.in/geN6w5fB Let's build a stronger, more connected community—together! ???? #OCNDS #ParentLeaders #YouBelongHere #MakeAnImpact #ParentAdvisoryBoard #CSNK2A1 #BoundlessPossibilities

?? Reintroducing Elisabeth Mellinger, Our Citizen Health Ambassador! ?? Elisabeth Mellinger is a key part of the Citizen Health family and a passionate advocate for families everywhere! As a Parent Advisory Board (PAB) member and Regional Ambassador for Canadian families, Elisabeth combines her professional expertise with a deeply personal perspective as a mom of a child with OCNDS. She understands the challenges families face and the vital need for health data to drive life-saving research. Elisabeth is here to guide families in joining Citizen Health, making it easier to participate in crucial research. Her commitment to this mission inspires us all! THANK YOU for all you do, Elisabeth! ? Join Elisabeth in Accelerating Cures for Families Everywhere! ? Your participation can lead to breakthroughs that bring real treatments and hope to those affected by OCNDS and other rare diseases. ?? Take the first step: https://loom.ly/g57KA-A Together, the possibilities are boundless! ?? ?? Citizen is currently available to US residents. English-speaking international participants are welcome to sign up, but they must upload their own records. #CitizenHealth #ShareForRare #OCNDS #CSNK2A1 #BoundlessPossibilities

?? Got Questions About Connect + Collaborate 2025? We’ve Got Answers! Joining us in Denver for the 2025 Connect + Collaborate Conference? We know you might have questions—so we’ve put together an FAQ just for you! ?? Why does the hotel require a credit card for my reservation? ?? What’s included in my registration? ?? What day should I arrive? Find these answers and more in our FAQ ?? https://loom.ly/QRgxYXA We can’t wait to see you in Colorado! ???? #ConnectAndCollaborate2025 #CSNK2A1Foundation #RareTogether #OCNDS #CSNK2A1 #BoundlessPossibilities #BetterTogether #FAQ

?? REMINDER! ?? Join us on Sunday, March 16th, for our bi-monthly OCNDS Family Zoom Meeting hosted by our Parent Advisory Board. Do you have questions about the upcoming conference? Are you on the fence about coming? During this call, we will discuss the upcoming July in-person conference. In addition, we will discuss successes, challenges, and all things OCNDS. This meeting is only for primary caregivers, guardians, and those living with OCNDS. We will be using AI technology for live-caption translation. Most languages are supported by this technology. When: Sunday, March 16th, 08:00 AM Pacific Time (US and Canada) Register in advance for this meeting: https://loom.ly/WVyHCPg After registering, you will receive a confirmation email containing information about joining the meeting. #ocnds #csnk2a1 #hopeintoaction #InUNITY #BoundlessPossibilities