CSNK2A1 Foundation @csnk2a1

CSNK2A1 Foundation @csnk2a1 has been a member of Linktree for 5 years and joined in August 2021. The social media accounts linked to from CSNK2A1 Foundation @csnk2a1 are: • Facebook • Instagram • YouTube • LinkedIn • Email Besides social media accounts, csnk2a1 has populated their site with: • Family Research Opportunities | The world • Rare Disease Curriculum - Global Genes • PEERS® for Dating | Semel Institute for Neuroscience and Human Behavior • Register for the 2026 "Move Your Way" Challenge • Research Ambassador Program | Epilepsy Foundation • Free Webinar: A Caregiver's Guide to Seizure Medications - DEE-P Information Resource Center • Simons Searchlight 2027-28 Community Advisory Committee Application • Support Kevin Pilgrim's Fundraiser for Csnk2a1 Foundation • Caregiver Bootcamp Survey • Register for Listening Out Loud: Communicating With Joy • FREE webinar and Q&A with IEP expert Staci Zimmerman • Research Roadmap with Dr. Rushing • Summer Institute on Neurodevelopmental Disabilities | UC Davis MIND Institute • Register for Epilepsy Advocacy Training Webinar • FREE Mental Health Course for Caregivers • Our YouTube Channel • The Roadmap to Rare Podcast • Take Action: S. 494 and H.R. 1189 – A National Plan for Epilepsy • CZI stories — The Story Collider • 2026 Drive for Diagnosis Golf Classic Auction Benefitting All OCNDS Research Programs • Free Webinar - Participating in Clinical Research: What Patients and Families Need to Know • Friendship, Redefined: Two Teens, One Rare Genetic Condition • The Caregiver's Compass Training - 2026 May/June Session Survey • Register for CANDID webinar - May 5th at 2PM ET • Register for the Virtual Run, Walk & Roll • CNBC Cures & Citizen Health Article • Progress and priorities from the 2025 Connect & Collaborate Conference. Translational Science of Rare Diseases • BTIG Charity Day - BTIG • Trailer: Roadmap to Rare - The Roadmap to Rare | Podcast on Spotify • Roadmap to Rare Podcast | CSNK2A1 Foundation • For immunocompromised kids, the return of measles is a crisis | STAT • RDLA Mentorship Application for 2026-2027 Survey • OCNDS Awareness Day 2026: Global Light-Ups • Emerald | Resilience Studies • CSNK2A1 FOUNDATION PILOT GRANT PROGRAM 2026 — Orphan Disease Center • We Were Never Alone, You’re Never Alone • Register: Community Webinar featuring Grace Branger • A Rare Disease Story from Colorado • Living Rare Living Stronger - Rare Disease Patient Event • A Year in Review: Highlights of 2025 • The Rare Advocacy Learning (RAL) program • Gene Therapy Interest & Tolerance Poll • 2026 The Caregiver's Compass Training Survey • Carly Krull | Staff • 2026 Advocacy One-Pager | CSNK2A1 Foundation | The world • ‎Citizen Health App - App Store • Research Explained: Identification and functional analysis of a novel CSNK2A1 frameshift variant in stillbirth • Simons Searchlight | Navigating Menstruation: Support for Caregivers of Individuals with Disabilities • Empowering Patients 2026: A Cell and Gene Therapies Summit | ASGCT • 2026 ECHO Autism: Catatonia in Autism • Coleman Hoedown Clip • rare disease day light up for rare (evergreen) • Foundations of CGT Module 1: Introduction to Cell and Gene Therapy | American Society of Gene and Cell Therapy • KK's Story • Webinar: Driving Change in Your State on Rare Disease Day • Rare Disease Fair • REN Publication: Multidisciplinary clinics • Rare Disease Day 2026 • I Challenge You • Rylee Crowell • Sibling Panel Summary: Connect + Collaborate Scientific & Family Conference • The 3rd (Not So Rare) Epilepsies ECHO Registration • Home - Seizure Action Plans • OCNDS (CSNK2A1) Speech & Language Research – Dr. Miya St. John | Conference 2025 • Research Explained: Rapid method for evaluation of CK2 enzymatic activity and CK2alpha/CK2beta-interaction in Escherichia coli cell lysates • Support Young Investigator Draft 2026 | PledgeIt for Charities • Science Snapshot - Gene Therapy Delivery to the Brain • CSNK2A1 Foundation Awarded Funding to Advance Patient-Centered Research for Ultra-Rare Neurodevelopmental Disorders • Access to Genetic Counselor Services Act | National Society of Genetic Counselors • How to Create and Add Your CRID to Your Simons Searchlight Account - YouTube • Okur-Chung neurodevelopmental syndrome - Wikipedia • From Pakistan to Global Partnership: How One Medical Student Helped Inspire a Growing Rare Disease Internship Program • Simons Searchlight | A Family Guide: Understanding Genetic and Clinical Diagnoses • CK2 Butterfly Collective | The world • Citizen AI Advocate Patient Webinar • Webinar: Open Enrollment Essentials for Rare Disease Families • Making a Difference Through Advocacy: My Journey to the Dáil • The Wait is Worth It! • Parent Education Webinar Series Alternative Communication 101 - YouTube • A Bee’s Lesson: How Small Efforts Create Big Impact in Rare Disease Advocacy • 2025 CSNK2A1 Foundation Virtual Run, Walk & Roll: Boundless Possibilities • Shop Photo Cards & Holiday Stationery | Minted • Youtube: Conference 2025 Recordings • Submit Feedback | Epilepsy National Plan • Family Planning Resource | CSNK2A1 Foundation • Your Personalized OCNDS AI Advocate | Citizen Health - Get instant answers from every detail of your medical history - all at your fingertips • Michael Boland, PhD • Simons Searchlight 2025 Q3 Report • Rare Diseases and Generative AI: Patient & Parent Perspectives Survey • RARE EPILEPSY SURVEY • Project WELLCAST: Rare Disorder Caregivers' Experiences of BURNOUT • Terri’s Journey to Diagnosis • Nicki’s Journey to an OCNDS Diagnosis • Family Stories Blog: Our Special Homecoming Ask • Support National Plan | Epilepsy Caucus • Making Sense of Health Data for Rare Diseases - NORD® Learning • Curso gratuito en línea sobre datos de salud de NORD • Webinar: Rare Disorder Caregivers’ Experiences of HOPE • Dr. Dennis Lal’s Milestones Survey • Global Genes and RDDC Rare Disease Curriculum Focus Group • Science Snapshot – Gene Therapy • Webinar: Advancing Newborn Screening Together • Research Explained: Clinical and molecular results in 15 Turkish patients with Wiedemann‑Steiner syndrome • Time Converter and World Clock - Conversion at a Glance - Pick best time to schedule conference calls, webinars, online meetings and phone calls. • An Open Letter about OCNDS by Carley Faith Callahan • Navigating School and Beyond: Advocacy Tips for Rare Youth and Young Adults • Project WellCAST Webinar Series - Internal Struggles: Navigating Anger, Shame, and Guilt • Start Genetic: Accelerate Answers with Genetic Testing • Tech Tuesdays: Exploring Seizure Detection Technology • EpiMonitor by Empatica • Back to School Supplies | Minted • YouTube Video about Upcoming Conference • 2025 PAB Application • Educational Supports | CSNK2A1 Foundation • CSNK2A1 Foundation + Citizen Health • Understanding the Significance of Your Genetic Variant | CSNK2A1 Foundation • GeneReview Overview • OCNDS One-Pager • Project WellCAST Webinar Series: Real(istic) Talk: Sleep • Register for SPACES (Catatonia and ASD) Webinar Series • Science Snapshot – Clinical Research IDs • Simons Searchlight April 2025 Quarterly Report • Simons Searchlight | How to Read the Vineland Adaptive Behavior Scales Growth Chart • Sign up for a CRID - Unique Universal Clinical Research ID • RDLA Advocacy Mentorship Application 2025 • Available Now: Catatonia and Severe and Challenging Behaviors Webinar • FREE Session with Genetic Specialist Sign Up • Monuments across the UK to be lit up to raise awareness of rare genetic syndrome • Rare Disease Day 2025: The Power of Genomics by Claire Whitehill • The Power of Support & Community: Interview with Jacquie Lopez • Claire's Story & the Power of Community Blog Post • Michelle Proctor-Simms' Journey with OCNDS • Why I Should Have Gotten the Autism Diagnosis for My Child Early On (or Why I Did Not) • LIVE NOW! Niagara Falls - The Falls Cam • 25 Million Wishes | Supporting kids with rare diseases • MDBR Press Release • SUDEP Survey • Chromosome Kids Like Me by Annette Fournier • Simons Searchlight • Simons Searchlight Dashboard • Beyond the Diagnosis: Finding Hope and Miracles in Everyday Moments • Rare, Resilient, Radiant: A Tribute to Harper and Rare Disease Day 2025 • Webinar: Catatonia in Pediatric and Neurodiverse Populations by Dr. Joshua Ryan Smith • Harper is Rare: Rare Disease Day 2024 • Rare Disease Day 2024 by Keri Ninness • Let's Get Curious Podcast with Jennifer Sills • NORD Webinar: Advocacy Academy • New Blog Post: Better Together by Connie Johnson • Parent Champion Application Guidelines 2025 • Science Snapshot: Growth Hormone • MINTED HOLIDAY CARDS FUNDRAISER • Science Snapshot - The Central Dogma: DNA, RNA, Protein • Research Explained: Neurobehavioral Evaluation Tool (NET) • Research Explained: Motor Milestones & Tone Abnormalities in Neurodevelopmental Disorders (NDDs) • Spotlight on OCNDS Research: Featured by C2ST • Better Together by Connie Johnson • Monday Milestones by Connie Johnson • Dream Big with Jennifer Sills: Movies, Advocacy & Rare Disease Awareness • Dr. Rushing's Bee Blog Post about how small actions lead to big change • GIVING TUESDAY DONATE • WEBSITE • REGISTER WITH THE FOUNDATION TODAY! • NEWLY DIAGNOSED FAMILIES • FDA Summary Report • TRAIN Partnership • Research Explained: Microcephaly in OCNDS • CDC Data and Statistics on Adults with Active Epilepsy • First Aid for Seizures • Molecular Psychiatry OCNDS Publication by the Rebholz lab • Rare As One Project: Empowering Rare Disease Patients Worldwide • 2024 #RAREis Global Advocate Grant • School toolkit • Unravel Biosciences and CSNK2A1 Foundation Press Release • Cilia in OCNDS Research Webinar • 1st Foundation authored Publication: A research roadmap for Okur-Chung Neurodevelopmental Syndrome - Gabrielle V. Rushing, Jennifer Sills, 2024 • Augustana University Survey - Genetic Disorders • Join the Rare Patient Network • Eurordis Rare Barometer Voices Survey • Simons Searchlight Community Update • OCNDS Research with Citizen Webinar • Sibling Symposium Registration • Understanding Child Development Webinar • Petition CIRM Future Funding of Rare Genetic Disorders • Mapping Rare New England Survey • Research Explained: Inherited loss of function variant in CSNK2A1 • Research Explained: Improvement of variant reclassification in genetic neurodevelopmental conditions • AAC Communication Video • Kramer Davis Nashville Clinic Virtual Tour • New OCNDS Research • Kirsty’s story: Okur-Chung neurodevelopmental syndrome • 2024 OCNDS Virtual Symposium Videos • Family Support Program - Child Neurology Foundation • OCNDS Clinician Survey • Simons Searchlight Quarterly Report • RESEARCH EXPLAINED: Implications for phenotype and genotype expansion • One Foot in Front of the Other: Navigating Anger By Jennifer Sills • Podcast Episodes | Disability Parenting featuring Amber Reynolds • Health Care Transition Kits Feedback Group Application • Whitehill Family Article • Why Sharing Your Rare Disease Story Can Help • Effectively Communicate Your Rare Disease Journey to Healthcare Providers • Sibling Research Study - Survey • To the Newly Diagnosed: Top 5 Things You Should Know • I Challenge You – CSNK2A1 Foundation • Our Regional Ambassadors • Rare Disease Drug Development Symposium • Funds Innovative Research in the Chow Lab to Expedite Potential Treatments for OCNDS • Awards Grant to TGEN: Dr. Huentelman to Study Patient-Derived Stem Cells to Advance OCNDS Research • Project FIND-OUT • UCLA CHAMPION Study • Collaboration w/ TREND Community to Gain Insights from Rare Disease Conversations • Register with the CSNK2A1 Foundation • YouTube Video 2023 Dr. Rushing OCNDS Research Roadmap • Post Research Roadmap Presentation Survey • Leave a review! • Family Resources • Gene Review Chart • New Research Explained: Exome Sequencing in 16 Patients with PSIS • Research Explained - Inherited CSNK2A1 variants (New Research) • Meet our Parent Advisory Board • OCNDS Awareness Day | Genetic Alliance UK • Genetic Disorders We Study - Simons Searchlight • Probably Genetic Symptom Checker • Seizure History Survey • The job of a scientific director • Appointment of Dr. Kimberly Goodspeed to SAB • Engaging Our Shareholders: Pfizer Announces New Chief Investor Relations Officer - Pfizer Investor Insights • Sanford receives $2M grant to study brain abnormalities • Jillian Kavanagh - Cures for the Commonwealth • The Value of Trusting Your Gut by Valerie Tharp Byers • GRANT TO UNRAVEL BIOSCIENCES TO ACCELERATE ORPHAN CNS DRUG DEVELOPMENT • Finn Family advocates for genetic testing after son’s rare diagnosis • PAB Claire Whitehill Article re: OCNDS Awareness Day • Empowering Families to Take Action - Simons Searchlight • Tarr, Kassner file bill recognizing OCNDS Awareness Day • How to Read the Vineland Adaptive Behavior Scales Growth Chart - Simons Searchlight • Alphabet Soup by Elisabeth Mellinger • How Newborn Genetic Screenings Can Change the Diagnosis • A Mother's Reflection on Parenting an Adult Child with OCNDS • Kirsty's School Hosts OCNDS Awareness Day • National Sibling Day: Empowering Rare Siblings and Ways to Help Them Feel, Seen, and Heard • Announcing Jamie Miller, new member of the Board of Directors • OCNDS Mom Blog Post on Awareness Day • Mum spent 8 years Googling child's symptoms before her diagnosis • September OCNDS Family Zoom Call • November OCNDS Family Zoom Call • February 2026 OCNDS Family Zoom Call • April 2026 OCNDS Family Zoom CAll • June 2026 OCNDS Family Zoom Call • August 2026 OCNDS Family Zoom Call • October 2026 OCNDS Family Zoom Call • December 2026 OCNDS Family Zoom Call • AGENDA • Rare & Ready • Orphan Disease Center • What You Can Do – Danny's Dose • The Importance of Brain Donation and How to Donate • New Partnership! Epilepsies Action Network • Autism BrainNet