History of CASN

Remembering Allan Sone

The following was supplied by Jodi Dewar, co-founder of the CASN.

The inspiration behind forming the CASN was my beloved father, Allan Sone. My father was a very active and young hearted man, even into his advanced years. At 73 years of age, he started to have various symptoms in the late summer which did not seem to be connected. He was hospitalized several times and when discharged, still did not know what was wrong with him. The doctors were puzzled for three months, until a team of doctors finally suspected amyloidosis. After testing, a diagnosis of AL Amyloidosis was confirmed. Due to the late diagnosis and his failing health, most treatments were unavailable to him. He passed away in February, 2006 at 73 years of age.

When my father was diagnosed, we had never heard of Amyloidosis. We needed support not just for him, but also for our family, as we tried to understand the disease and navigate his journey together. At that time, I found there was a huge void in Canada. In our search for information about the disease, and support for our family, we were having to reach out to the Amyloidosis patient support organizations established in the US and the UK.

Upon my father’s death, I vowed to ensure that other patients and families would not feel as alone in their diagnosis and living with Amyloidosis, as my father and our family had felt. I also wanted others to have an opportunity for much better outcomes, as having access to credible information and raising awareness of Amyloidosis could lead to a quicker diagnosis. My father would be proud to know that this organization, dedicated to his memory, is helping others feel a little less alone: providing Amyloidosis patients, their families and caregivers, with valuable information, and creating awareness so essential for earlier diagnosis and better potential outcomes for Amyloidosis patients.

Jodi Dewar
Cofounder, Canadian Amyloidosis Support Network