cureCADASIL Association

From CADASIL families:

 "My mom has just been diagnosed with CADASIL. We thought it was MS for so long, but now the doctor says it is CADASIL. Is there really no treatment?"  

 "My dad has CADASIL. I am only 28 and feel fine. Could I really have this too? What should I do?"  

These quotes are all too familiar with families who are diagnosed with CADASIL and looking for help. CADASIL is a rare, dominantly inherited disorder causing strokes, neurologic and other deterioration in individuals as early as 30 years of age. Other symptoms can include migraines with and without aura, headaches, TIAs, fatigue, mood disorders, seizures, dizziness, dementia, and numbness and tingling in extremities.  Although rare, CADASIL is the leading cause of inherited stroke. It is often misdiagnosed as Multiple Sclerosis or other neurological conditions and, in many cases, physicians do not even test for CADASIL. 

The CADASIL mutation has been identified on NOTCH 3 gene, and research has progressed to the identification of biomarkers, which is the first step toward development of a treatment for CADASIL.

Help us increase our impact through our Research Alliance, CADASIL Family Registry (cureCADASILFamilyRegistry.com), CADASIL Connection webinar series, CADASIL care webcasts for patients and families, as well as physician education and collaboration efforts. These programs are funding research and building relationships with current CADASIL researchers as well as engaging physicians new to CADASIL. We support research that is not funded by traditional government grants, including CADASIL lab needs, facilitating biomarker or next step research and collecting data for future research through the cureCADASIL Family Registry.

Help cureCADASIL Association expand our reach in 2019. Any donation you can give makes a difference for CADASIL, a rare, underfunded disease that affects entire families.

The mission of cureCADASIL Association is to raise awareness of CADASIL, ensuring it will be universally recognized and understood by the medical community, enabling patients to be correctly diagnosed. We aim to unite patients and the medical community toward the common goal of treatments and, ultimately a cure for this rare genetic disease, by promoting Communication, Advocacy, Research, and Education.

cureCADASIL Association is a 501c(3) nonprofit organization run by a Board of Trustees made up of volunteers including CADASIL patients, family members of CADASIL patients, and others touched by this genetic disease.