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 strokes within a month's time. Tom was seemingly healthy with none of the obvious stroke indicators. Doctors were at a loss to explain what was happening. It took a year of visits to various medical specialists, who preformed numerous tests, before a genetic blood test provided a proper 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.
Tom showed tremendous courage and grace when faced with the most severe form of this disease. We will honor Tom by raising CADASIL awareness and funds for treatments and ultimately the cure.
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 an inherited, neurodegenerative disease caused by a mutation on the Notch 3 gene. With this mutation, GOM (granular osmiophilic material) deposits in the smooth muscle walls in small blood vessels. Over time, the GOM deposits thicken the blood cell walls causing them to 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, and vascular 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 systemic, with GOM deposits throughout the body. The reason it is so devasting to the brain, is that the brain is the only major organ that doesn’t have a vascular “back up” system.
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.
At this time, there is no treatment or cure for CADASIL.
Thank you for supporting us and the CADASIL community!
-The Commonly Rare Design Team
Commonly Rare Designs has partnered with thinkCADASIL
The non-profit thinkCADASIL is a group of patients, family members and friends dedicated to spreading global awareness of this devastating disease and raising funds for treatment and ultimately a cure! To learn more about what is happening in the CADASIL community please go to thinkCADASIL.org
