A Legacy of Awareness, Advocacy, and Hope
After nearly two decades of unwavering dedication, we share with heavy hearts that, due to unforeseen circumstances, our foundation has temporarily closed.
When we began in 2005, CADASIL was rarely recognized and information was incredibly difficult to find. What started as a small, determined effort grew into something far greater than we ever imagined. Our foundation became a worldwide voice—helping to put CADASIL on the map and bringing long-overdue awareness to this rare disease.
We had the incredible privilege of working alongside medical professionals, researchers, and families across the globe. Together, we helped bridge gaps in knowledge, supported countless individuals navigating their diagnosis, and created a trusted, compassionate community where none previously existed.
The impact of this work lives on—in the awareness raised, the connections made, and the lives touched around the world. While our foundation may no longer be active, its legacy will continue through every person it helped and every door it opened.
Our website will remain available as a lasting resource for patients and their loved ones.
For continued support and updated information, we encourage you to visit Cure CADASIL Association.
Thank you for believing in our mission, for sharing your stories, and for allowing us to walk this journey with you.
This is not the end of the impact—only a new chapter in the story we helped begin.
And always remember—you are never alone.
A heartfelt thanks to Dean and his family for hosting our website. Our partnership, which began in 2010, has been invaluable. Dean is Founder/President of the MLD Foundation.
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”.
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.
What causes CADASIL?
It is caused by an anomaly (mutation) of one single gene, called Notch3, found on chromosome 19.This gene plays a part in the formation of the blood vessels and the way they work. Its mutation has an impact on the movement of blood inside the brain.
The age of the onset of symptoms, the evolution of the illness, as well as the type and the seriousness of the symptoms vary from one person to another, even if they belong to the same family.
The most common symptoms appear in adulthood. Not all the sufferers display the full range of symptoms described below. The symptoms come on very progressively.
Attacks of migraine with aura, that is, preceded by visual disturbances
Strokes and their consequences: problems with balance, walking, speech, vision, hearing…
Cognitive problems (difficulties with concentration and with executive functions, problems with memory, apathy…) and problems of mood (depression…)
Epilepsy
With time, the patient slows down physically and intellectually
Are there any treatments?
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
ENROLL TODAY
2023 CADASIL study
https://cadasil-consortium.org/
| CONSIDER DONATING Please go to https://curecadasil.org/donate-to-cure-cadasil/ |
Information Videos
INFO: ICD-10-CM I67.850 is a new diagnosis code for CADASIL that became effective on October 1, 2018..