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With advent of internet technology, Terry O'Malley believed that we could reach and help many more patients and caregivers throughout the world by establishing a web site dedicated to patient support and awareness. His dream became a reality in 1999. Unfortunately, Terry passed away in May 2000 due to complications from AL amyloidosis. He may be gone, but certainly not forgotten, as he was the motivating force behind the institution of the Amyloidosis Support Network (ASN) along with the development and deployment of www.amyloidosis.org
After supporting the website since 1999, in 2004, Dennis Krysmalski founded the Amyloidosis Support Network (ASN) as a non-profit organization incorporated in the State of Georgia, USA. The purpose of which was to be more proactive. The Amyloidosis Support Network Inc. was organized exclusively for charitable purposes under Section 501(c)(3) of the Internal Revenue Code. The "Support Network" was committed to making a difference in the lives of patients and families. Our core mission was medical community awareness of amyloidosis and its devastating effects. Why is this so important? Because we believe awareness will increase the rate of early detection, and lead to improved survivability and quality of life. We also developed patient education materials and programs.
The evolution continues...the Amyloidosis Support Network (founded by Dennis Krysmalski) and the Amyloidosis Research Foundation (founded by mary O'Donnell) have merged and has become the Amyloidosis Foundation. Inc.(AF). The merger became effective at the end the 2007. We believe this merger will improve our ability to carry out our mission and thus serve patients and families better. We'll be able to do things that as separate organizations we could only dream of.
We sponsor programs and services through the leadership of our knowledgeable and dedicated volunteers.
Meet the Board of Directors
Meet our Medical Advisory Board (MAB)
We invite you to read our Annual Report-2005.
We invite you to read our Annual Report-2004.
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.
Our History
Independent from the Amyloidosis Foundation, Jim Lang, operates a support number out of Houston Texas. We want to acknowledge our gratitude to Jim Lang and Amyloidosis Network International, Inc. for his support during the early stages of Amyloidosis Support Network. Over the years he has corresponded with hundreds of patients and/or their families or friends all across the nation and in several foreign countries via telephone and letters. The idea for Amyloidosis Network International, Inc. originated during 1987 when Don Rasmussen of Wausau, Wisconsin first heard about N.O.R.D. (National Organization for Rare Disorders) through the Phil Donahue Show. Consequently, he read about Richard Caliguiri, Mayor of Pittsburgh, Pennsylvania and later about Louis Tullio, Mayor of Erie, Pennsylvania, who were both diagnosed as having amyloidosis. Mayor Caliguiri, when answering the many letters he received, included a questionnaire that he used to tabulate a list of those wishing to become involved in a support network. The list of Mayor Caliguiri's and N.O.R.D.'s gave Donald names which he used to form the first network and for the first time he could correspond with others. Finally, we very much appreciate the vision Donald Rasmussen (1917-1992) and the contribution of all those mentioned above to make it a sustained reality.
Board of Directors
Raymond Comenzo, MD
Richard Cwiek
Robert A. Kyle, MD
Isabelle Lousada
Jeana Rossi-Miller
Stephen P. Miller
Martha Skinner, MD
Mary O'Donnell
Medical Advisory Board
Our medical advisory board consists of some of the most eminent physicians in the amyloidosis community. The purpose of this board is to advise us on medical issues & policies as it relates to research, our website and publications.
We are very proud to list the following members:
Raymond Comenzo, M.D.
Memorial Sloan Kettering Cancer Center
Rodney H. Falk, M.D.
Harvard Vangaurd Medical
Morie Gertz, M.D.
Mayo Clinic - Rochester
David Seldin, M.D.
Boston Medical University - Amyloid Treatment Center
Alan Solomon, M.D.
University of Tennessee Graduate School of Medicine
Jeffrey Kelly, PhD
More information is available in research section on this web site
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