Understanding
Okur-Chung Neurodevelopmental Syndrome
Project FIND-OUT
What is Project FIND-OUT?
Project FIND-OUT is an innovative project provides crucial support to families, helping them understand if there is an underlying genetic cause of their child’s symptoms through early whole genome sequencing. This is not just about finding answers; it’s about contributing to a larger understanding of these disorders, benefiting the broader community of patients, families, and healthcare providers.
Families participating in Project FIND-OUT will receive a comprehensive package of support, including a free neurological assessment and whole genome sequencing for their babies, as well as genetic counseling for the family. This holistic approach ensures that families are not only informed about their child’s condition but are also guided on the next steps to take, armed with recommendations tailored to their unique situation. All these services are offered free of charge and are accessible remotely, ensuring that help is just a phone call or click away, regardless of a family’s location.
Who Can Benefit?
Project FIND-OUT is only open to infants in the United States between the ages of 3-12 months who have 2 or more of the below symptoms.
Feeding or gastrointestinal issues
Issues with movement/abnormal movements
Neonatal intensive care (NICU) admission
Developmental delay
Other (congenital malformations, atypical growth or specialist referral)
Unprovoked seizures
Tone (low muscle tone)
What Are The Benefits Of Project FIND-OUT?
- Families who participate will receive the following free services:
- Meet with a genetic counselor
- Report with your child’s genetic testing results
- Connect with a specialist, who can help you understand next steps and potential treatment options
- Participate in research
By participating in Project FIND-OUT, you will contribute to an important research study on the value of genetic testing. We hope this study will lead to the development of guidelines for physicians and health insurance companies. Having guidelines may make it easier for other families to get genetic testing in the future and a genetic diagnosis in the future. Lastly, getting children diagnosed earlier will speed up access to new treatment options.
For more information and to enroll in Project FIND-OUT, please visit projectfindout.org.