Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, developmental and neurological delays, and a shortened lifespan. 
While CS children have been given a terrible lot in life, their lives are remarkable. One of the characteristics of CS is a jovial and joyful demeanor.

Meet one of our Cockayne Syndrome Children, Jamison Rose...

Jamison is the most loving, friendly, and full of life 7-year old you will ever meet. People always remark about what a delightful, social and outgoing child she is, truly a very special girl. Jamison was diagnosed at age 3-½ with Cockayne Syndrome.

At diagnosis, her mother was told: It has NO cures, NO treatments, and is 100% terminal.


Imagine being told that your child has a limited lifespan, and there is nothing you can do to help her; surely this is the most powerless feeling in the world for parents and family.

The National Initiative for Cockayne Syndrome (NICS) chooses to fight; fight for Jamison and all the children suffering from this devastating syndrome.

NICS is hosting The Bash for Cockayne Syndrome in the hopes of funding medical education to support early diagnosis and research needed to find a viable treatment for this disease. With your help, Jamison and children like her, can have the chance to live longer and fuller lives.

100% of your tax deductible donation will go directly to fund medical education and research related to CS through the National Initiative for Cockayne Syndrome.


To support the work of the National Initiative for Cockayne Syndrome, please consider making a donation

Thank you for your generosity

National Initiative for Cockayne Syndrome, incorporated in the State of Maryland, is a not-for-profit charity under section 501(c)(3) of the Internal Revenue Code and has full tax exempt status. Maryland Sales and Use Tax Exemption Number 31208646.

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