Canadians Amyloidosis Support Network

The Canadian Amyloidosis Support Network, Inc. is a not-for-profit, all volunteer organization, formed by amyloidosis patients and family members of amyloidosis patients. Our Support Network refers to our commitment to making a positive difference in the lives of patients and families.

This organization has been formed in loving memory of late Allan Sone, and the late Honourable Judge William Gilbert.

What Services Are Provided?

We operate a toll free patient support line (our toll free number).
On the internet, we operate the www.thecasn.org website. Our website offers:

The support network can help patients, caregivers and families stay informed about survivorship concerns and quality of life issues.

All of our activities are operated entirely by unpaid volunteers. Our major source of income is from contributions made at our website, fundraisers and patient memorials. This money is used entirely to support our mission and goals including the telephone line and website.

Meet Our Board of Directors

Jodi lives north of Toronto with her husband and youngest son. Her two other children attend Universities in Ontario. Jodi has worked as a Director of Organizational Development for an international Telecommunications Company. She also has several years experience in Human Resources and Volunteer Management and Fundraising. When her father became ill she became aware of a large void in Canada, in the area of awareness of Amyloidosis and support for Amyloidosis patients and their families. Since Jodi's father passed away in February of 2006 with Primary Amyloidosis, she has dedicated herself toward ameliorating the experiences of others diagnosed with Amyloidosis.

Fred is a native of the United States, having moved to Edmonton Alberta 32 years ago. He became a Canadian Citizen 29 years ago. He moved here from Washington D.C., where he served as Associate Secretary for Clinical Program Development with the American Speech-Language-Hearing Association. Fred holds a BSc, MA, and Ph.D., in Speech Language Pathology and Audiology, and moved to Edmonton to become the Director of Speech and Hearing at the Glenrose Rehabilitation Hospital. Over the course of his 30 years in Canada, he served as President of the Canadian Speech and Hearing Association, Secretary of the Beit Horim Society (an organization in Edmonton devoted to the development of a residence for Jewish Senior's) and on the boards of a variety of other not for profit organizations. His interest in Amyloidosis arises from his wife having been diagnosed with Primary Amyloidosis, four years ago. She is currently in remission following a stem-cell transplant that she underwent 2 ½ years ago. Fred and his wife Sheila are acutely aware of the need for further research in this disease, as well as the need in Canada for support groups, hence their interest in the development of our organization.

Norma is a native Calgarian who has recently retired as a Clerk in the Court of Appeal. She was then appointed Returning Officer for Elections Alberta during the Provincial Election of 2004. Since her husband's diagnosis of Amyloidosis November 2004, Norma has focused her compassion and devotion to learning about her husband's illness and giving him the love, care, and encouragement he needed during their last few years together. She is now committed to supporting others who have been stricken with this "silent killer" and to increasing awareness of this disease. Family is a very important part of her life and she enjoys all of the time spent with her two step-daughters, son-in-law, and two grandchildren.

He is responsible for overseeing the organizations efforts to achieve its stated goals of increasing awareness among the public and professional communities, as well as, linking patients/families to further experienced medical and emotional support resources thereby improving survivability and quality of life of those afflicted with amyloidosis. Mr. Krysmalski was diagnosed with AL amyloidosis in 1998. Formerly, he was a Senior Director for Gartner Inc. responsible for coordinating the scope, requirements, and strategies for improved performance to ensure client expectations are met or exceeded specializing in networking and telecommunications engagements. Prior to Gartner, Mr. Krysmalski was a senior management consultant in the telecommunications area with Deloitte & Touche. In other positions, he has had responsibilities in corporate management where he led many projects focusing on strategic planning, network management, operational efficiency and financial management. Mr. Krysmalski is a former member of the Board of Directors for the International Communications Association (ICA). His background includes nearly 30 years of Information Technology experience with FORTUNE 500 companies.

Marsha has always lived in the greater Toronto area and practices part-time as a community pharmacist. A Primary Amyloidosis and Multiple Myeloma patient since diagnosis in May 2000, she has been on the receiving end of great care at Princess Margaret Hospital . Sophisticated treatment has led to a complete remission enabling Marsha to become an active member of the Toronto Myeloma Support Group that was so instrumental in her recovery. She sees the need that the Canadian Amyloidosis community has for this kind of network. Marsha has a wonderfully supportive family and she and husband Jim like to travel, often following the cross-country tours of stage manager daughter, Annie.

Born in Sarnia Ontario. He has lived in Calgary Alberta since 1979. He retired in August 2005 as the President of a small privately held oil and gas company. It was shortly after that, when he learned of his father-in-law's illness and later diagnoses of amyloidosis. It is out of love, deep respect and a strong desire to honour the man he called dad for 27 years that he sits on the board of this committee. Les is a professional geologist who from 1991 to 2000 was the President of a small oil and gas company listed on the TSE. From 2000 to the present he has been the president of two private oil and gas companies. He has 15 years experience serving on the BOD of these companies, nine years as the chairman of the public company.

What Services Are Provided?

Meet Our Board of Directors

Together we can make a difference... You are not alone!