The Amyloidosis Foundation

The Amyloidosis Foundation is a non-profit organization that is the result of the merge in 2007 of the Amyloidosis Research Foundation and the Amyloidosis Support Network.

The Amyloidosis Research Foundation was founded by Don Brockman and Mary O’Donnell in 2003 with the purpose of supporting medical and scientific research for amyloidosis.

The Amyloidosis Support Network has roots back to 1999 when Terry O’Malley believed that patients and caregivers could be reached, and help could be provided through the internet. This was the genesis of the website which was dedicated to patient support and awareness. Unfortunately Terry passed away in May 2000 due to complications from Amyloidosis. Dennis Krysmalski supported the website since 1999 and in 2004 officially established the ASN as a non-profit organization. The commitment was to make a difference in the lives of patients and families, and to increase the awareness of the disease among the medical community.

With the merge of these two organizations, the missions of both are brought together. We continue to support research through our grant program, work towards raising awareness of the disease and helping patients and their families.

http://www.amyloidosis.org/index.html

Thank you for this information, JC.

When my Mom was diagnosed with amyloidosis in 1991, there was no treatment available and my family needed support badly, which was also not available at that time.

My Mom passed away 4 months after being diagnosed. As a family, we decided to donate her organs for research at Boston Medical Center.

My pray is that someday there will be a cure!