Welcome to CADASIL Together We Have Hope

What is CADASIL?

CADASIL is a genetic disease affecting the small blood vessels of the brain. It leads to poor irrigation of certain areas of the brain which causes symptoms that vary greatly from one person to another. Its name means “Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy,”

CADASIL is due to an anomaly (mutation) of a unique gene called NOTCH3, located on chromosome 19. This gene is involved in the formation of blood vessels and their functioning. This anomaly has an impact on the irrigation of blood in the brain.

It affects both men and women equally. Each child of a person carrying the mutated gene has a 50% risk of inheriting it  It is important for you to know that there is nothing that you or your family did that caused you to inherit the CADASIL gene. We have no control over the genes we inherit, just as we have no control over the genes we pass on to our own children. 

Currently, there is no treatment that can cure or prevent the progression of the disease. A healthy lifestyle and the treatment of symptoms as they appear can improve the quality of life of patients. Smoking is a proven aggravating factor for the disease.

We are a 501(c)(3) non-profit organization, recognized by the IRS as eligible to receive tax-deductible donations. We would not exist without your support and are here for you. No matter what the size of your donation, you will impact the lives of many. Remember we have no paid staff and do not require membership dues. 

We run solely on donations. Thank you so much for your continued support as“Together We Have Hope!”

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Thoughts of others with CADASiL – Rare Disease Day