Understanding
Okur-Chung Neurodevelopmental Syndrome
Press Releases & Media
Chan Zuckerberg Initiative awards Noe Valley organization $50,000 to advance research on rare disease
For seven years, Jennifer Sills wondered whether her daughter’s inability to speak and other developmental delays were really explained by the autism diagnosis doctors gave. Something didn’t seem right as she missed the typical development milestones. Then, in 2016, a doctor ordered a genetic test and discovered the issue: a rare mutation in the gene known as CSNK2AI.
OCNDS Awareness Day for April 5th
The CSNK2A1 Foundation is proud to announce its annual International OCNDS Awareness Day on April 5th in honor of Okur-Chung Neurodevelopmental Syndrome (OCNDS), an ultra-rare genetic syndrome caused by a mutation in the CSNK2A1 gene. This day aims to raise awareness about OCNDS and help families worldwide affected by the syndrome.
CSNK2A1 Foundation Appoints Dr. Gabrielle Rushing As Science Program Director
In an exciting new development, CSNK2A1 Foundation, a patient-centered 501(c)(3) nonprofit organization dedicated to advancing the understanding and treatment of Okur-Chung Neurodevelopmental Syndrome (“OCNDS”), announced the appointment of Dr. Gabrielle Rushing as their new Science Program Director. Selected by their board of directors, Dr. Rushing is a dynamic leader who will provide visionary leadership for all scientific efforts of the Foundation.
High profile monuments to light up to raise awareness of rare genetic syndrome
A host of high-profile monuments in the UK and around the globe are set to light up this April to raise awareness of a rare genetic syndrome. Okur-Chung neurodevelopmental syndrome (OCNDS) was first discovered in 2016 and is caused by a change on the CSNK2A1 gene, located in chromosome 20.
Mum spent eight years Googling her child's symptoms before diagnosis given
Claire Whitehill said she spent years wondering whether she had done something wrong to cause her daughter's issues.
A mum knew something was wrong when her child was not learning to sit up, talk or crawl as a baby.
Gillette couple advocates for genetic testing after son’s rare diagnosis
Ronin Finn drives one of his Hot Wheels across the blinds of a window Wednesday at his Gillette home. Ronin was diagnosed recently with a rare genetic disorder known as Okur-Chung Neurodevelopmental Syndrome, which is characterized by delayed psychomotor development and a number of other symptoms.
Jillian Kavanagh - Cures for the Commonwealth
Hi! One of our OCNDS Compassion Initiative Founding Members was featured online by Cures for the Commonwealth. Cures for the Commonwealth is an educational campaign coordinated by the Massachusetts Biotechnology Council. Through the voices and inspirational stories of patients and advocates, Cures for the Commonwealth highlights Massachusetts’ role as the world-leader in the discovery of new life-changing cures, vaccines and therapies, giving hope to millions of patients and their families struggling with rare and life-threatening illnesses.
Pennsylvania Family OCNDS Journey Featured
Hitting milestones in the early years of a child’s life is an important aspect of a child’s development. So when Alyssa Ronco noticed that her daughter, Angeli, wan’t hitting some of those milestones, she knew challenges were likely ahead. What she didn’t know was that it would take seven years before anyone was able to pinpoint exactly what was going on with her little girl.
Valley woman calls attention to a recently identified disorder
When Alyssa Ronco saw photos of the Pennsylvania State Capitol in Harrisburg lit up the entire last week of April, she was downright giddy with excitement.
CSNK2A1 Foundation Organizes FORWARD TOGETHER, a Global Fun Run Event, to Raise Awareness and Find a Cure for OCNDS
In an effort to make a difference, the CSNK2A1 Foundation (Foundation) is organizing the FOWARD TOGETHER Virtual Run, Walk & Roll for Okur-Chung Neurodevelopmental Syndrome (OCNDS) on October 14th and 15th. This global event aims to raise awareness and fund research for OCNDS, with the ultimate goal of finding treatments and a cure for OCNDS.
The family of a girl with a rare genetic syndrome is calling for people to join them in Hyde Park next month at an event to raise funds and awareness about her condition.
Claire Whitehill’s 12-year-old daughter Kirsty was diagnosed with Okur-Chung neurodevelopmental syndrome (OCNDS) in 2019, at the age of eight.
CSNK2A1 Foundation Expands Scientific Advisory Board with Addition of Genetic Research Expert Dr. Rachel Bailey
The CSNK2A1 Foundation (Foundation) is thrilled to announce the addition of Dr. Rachel Bailey to its esteemed Scientific Advisory Board (SAB). With over a decade of experience in genetic research and a strong passion for finding treatments, Dr. Bailey's expertise will be crucial in accelerating the path to treatment for individuals with Okur-Chung Neurodevelopmental Syndrome (OCNDS).
CSNK2A1 Foundation Strengthens Research Efforts with Appointment of Dr. Kimberly Goodspeed to Scientific Advisory Board
CSNK2A1 Foundation, the sole organization dedicated to supporting individuals and families affected by Okur-Chung Neurodevelopment Syndrome (OCNDS), is pleased to announce the addition of Dr. Kimberly Goodspeed to its esteemed Scientific Advisory Board (SAB). Her appointment to the SAB signifies an exciting development in the organization's pursuit of advancing research and support for those affected by OCNDS. Her expertise and passion are invaluable assets that will contribute to new insights, improved treatments, and enhanced support for individuals and their families.
The CSNK2A1 Foundation today announced an award of grant funding to Unravel Biosciences, Inc. (“Unravel”), a therapeutics company that leverages a machine-learning network model of human health to advance drugs for complex diseases. This grant will enable rapid preclinical translation of small molecule therapies for Okur-Chung Neurodevelopmental Syndrome (“OCNDS”).
CSNK2A1 Foundation Awards Grant to TGEN: Dr. Huentelman to Study Patient-Derived Stem Cells to Advance OCNDS Research
CSNK2A1 Foundation, a leading rare disease organization, is pleased to announce the award of a research grant to the Translational Genomics Research Institute (TGen), part of City of Hope, to further the understanding of Okur-Chung Neurodevelopmental Syndrome (OCNDS). This partnership aims to improve our understanding of how this rare genetic syndrome affects development and will accelerate the discovery of potential treatments.
Advancing Understanding and Treatment of Okur-Chung Neurodevelopmental Syndrome Through Groundbreaking Research
The CSNK2A1 Foundation, a patient-centered 501(c)(3) nonprofit organization dedicated to advancing the understanding and treatment of Okur-Chung Neurodevelopmental Syndrome (OCNDS), is thrilled to announce the recipient of the CSNK2A1 2024 Million Dollar Bike Ride pilot grant.