About Us
Who are we?
Commonly Rare Designs LLC is a family operated business specializing in original designs & handmade crafts while raising awareness for CADASIL and funds for research.
Our journey began in early 2015 when husband & Dad, Tom, suffered two significant cerebral accidents within a month's time. Tom was healthy with no obvious stroke indicators. Doctors were at a loss to explain what was happening. It took a year of visits to various medical specialists, before a genetic blood test provided the diagnosis. The diagnosis was CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). A disease with no treatment or cure.
Our beloved Tom passed away in the summer of 2022. He will forever be remembered for his smile, infectious laugh, love of life, and a deep concern for others.
We honor Tom’s tremendous courage and grace when faced with the most severe form of this disease by raising awareness and funds for CADASIL research through on-line and in person events
Why “Commonly Rare”?
“Commonly Rare” is how the disease CADASIL was once described to our family. We thought that would be a fitting name for the brand! CADASIL is more common than you may think, but often goes misdiagnosed or even undiagnosed.
Why a Unicorn?
Unicorns are often associated with magic or freedom, but they are also a symbol of healing, hope and joy in difficult times. For these reasons they make the perfect mascot for our brand.
What is CADASIL?
CADASIL is a systemic, inherited, primarily neurodegenerative disease caused by a specific mutation on the Notch 3 gene. There are over 280 mutations of the Notch 3 gene. With the CADASIL mutation of the Notch 3 gene, protein is incorrectly folded causing integrity issues with the small blood vessel walls throughout the body. Over time, the blood cell walls collapse and/or weep, which lead to a variety of symptoms. Symptoms may include:
Migraine
Stroke
White Matter Disease
Mood disturbance
Cognitive decline
Gait issues
Dementia
Symptoms range from mild to severe. Even within families, the symptoms and severity of CADASIL can be, and often are, as individual as the person.
CADASIL is the most common form of hereditary stroke. However, because CADASIL is often misdiagnosed as MS, ALS, Parkinson’s, and other neurodegenerative diseases or not diagnosed at all, there is no accurate data on how many people actually suffer from the disease.
The accepted numbers on CADASIL are 5 per 100,000 people. The same as ALS. It has been recently reported that as many as 1 per 450 people carry some type of Notch 3 mutation.
It is clear that more research is needed to better understand Notch 3 mutations. With understanding will come treatments and ultimately the cure.
Thank you for supporting us and the CADASIL community!
-The Commonly Rare Design Team
Where do our donations and proceeds go?
From now until November 16, 2024 any purchase of CADASIL awareness merchandise proceeds will go to the Elahi Lab at Mt Sinai Hospital, NY.
Please help Dr Fanny Elahi and her research team continue the work that is so vital to unlock the mysteries of CADASIL.
