£15,000 is the tip of the iceberg and will fund just one go at the 'Cadasil in a dish' study (more of this below). Anything over and above the 15K will go to further 'dishes' and We are CADASIL Support UK, a small charity that supports families affected by the rare genetic disease CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy), a condition that can devastate the lives of those affected by it, and which currently has no treatment.
CADASIL is often misdiagnosed as MS, but the more research we can fund; the better chance we have of getting this condition more well known in both the private and professional world.
Symptoms of CADASIL often start in early adulthood and include complex migraine, transient ischemic attacks (TIAs) and psychiatric disorders. This progresses to recurrent strokes which cause physical disability, cognitive difficulties and, ultimately, vascular dementia. Although awareness of CADASIL is spreading, and is less rare than originally thought, it is still underdiagnosed- and often misdiagnosed as MS due to having similar symptoms.
The impact of CADASIL goes beyond medical symptoms, affecting quality of life, relationships, employment and financial circumstances. As CADASIL is genetic, multiple members of a family can be affected at the same time, and parents live with the worry of having passed the condition on to their children.
Our patron, Professor Markus, and the stroke research team at Addenbrookes Hospital (https://www.cambridgestroke.com/cadasil.php) have identified potential treatments for CADASIL but, with limited funding available, more money is needed further develop these.
We aim to raise a minimum £15,000 to support Addenbrookes to:
• Expand their ground breaking ‘CADASIL in a dish’ study to test potential treatments on humans. Each dish costs £15,000.
• Fund a PhD placement to focus on testing new genetic therapies for CADASIL. A placement of three years costs around £90,000. Natalia is the newly appointed PhD student and we would love to support her.
We would be grateful for any amount you can spare, however small, to give hope to families affected by CADASIL.
Agnes’s story:
My dad was diagnosed with CADASIL after suffering recurring strokes in his early forties. He was initially diagnosed with MS until a genetic test proved otherwise. The disease progressed quite rapidly, and he moved into a nursing home in his early sixties, requiring round the clock care. He is now suffering from advanced vascular dementia. My sister and aunty have also been diagnosed with CADASIL so it's had a huge impact on my family. My symptoms began in my teens with psychological issues, progressing to complex migraines and stroke-like episodes in my twenties. When I tested positive for inheriting CADASIL at age 30, I was terrified. I’m 45 now and try not to fear the future but it’s hard not to. I’m aware that my memory and cognitive skills are getting worse. My biggest worries are becoming a burden to my family and that I’ve passed the condition on to my daughter. My biggest hope for the future is that she is CADASIL-free and that a cure is found.
Please help us to help Addenbrooke’s Hospital to find a treatment for CADASIL. If not for us then for future generations.
CADASIL Support UK (registered charity number 1175812)
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