Amyloidosis Foundation


 

The Amyloidosis Foundation began with the vision of two patients, Don Brockman and Dennis Krysmalski. Don’s desire to support research and Dennis’s commitment to support patients and increase awareness has been the driving force behind the foundation for the past 15 years. Don’s widow, Mary O’Donnell, has led the foundation to become the success it is today.

Our key priorities are:

  • Provide research grants for all types of systemic amyloidosis

  • Raising awareness in the medical field for an earlier diagnosis.

  • Educating medical professionals through our Grand Rounds program and attendance at medical conferences.

  • Empowering patients through our comprehensive range of services, including accurate up to date information.

WHAT IS AMYLOIDOSIS?

AMYLOIDOSIS is a term that represents several different types of diseases where an abnormal protein called amyloid is produced. These amyloid protein fibers can attach and deposit into organs, tissues, nerves and other places in the body. When that happens, normal function of the area can be affected. As the amyloid protein increases, health problems and organ damage may occur. “OSIS” means increased, or an abnormal, supply of AMYLOID protein.

Most of the amyloidosis diseases have different treatments; therefore, the correct diagnosis is extremely important.

Types of Amyloidosis
When amyloid clusters together, it can be in several places in the body at the same time. This is called Systemic. If it gathers in one specific area of the body only, it is called Localized.

There are several different types of amyloid proteins. When discussing the various types, the “A” stands for Amyloid. What follows the “A” is what defines the specific type of amyloid protein involved. For example, these are the three most common Systemic Amyloidosis diseases:

AL – A is for amyloid. L is for Light Chain

AA – A is for amyloid. A is for Serum A Protein (also known as SAA)

ATTR – A is for amyloid. TTR is for Transthyretin (also known as TTR) protein.

 

WHO WE ARE

The Amyloidosis Foundation is the result of the merging in 2007 of the Amyloidosis Research Foundation and the Amyloidosis Support Network so that the missions of both organizations could be brought together.

The Amyloidosis Research Foundation was founded by Don Brockman and Mary O’Donnell in 2003. The ARF mission was to support medical and scientific research for amyloidosis.

The Amyloidosis Support Network has roots back to 1999 when Terry O’Malley began helping patients and developing a website that was dedicated to patient support and awareness. Unfortunately, Terry passed away in 2000 due to complications from Amyloidosis. Dennis Krysmalski worked on the website with Terry and continued the vision. Then in 2004, he officially established the ASN. The mission was to make a difference in the lives of patients and families, and to increase the awareness of amyloidosis among the medical community.

WHAT WE DO

The Amyloidosis Foundation began in 2003 as a small idea to support patients, which has grown into an international resource – celebrating our 15th anniversary in 2018. We provide research grants for all types of systemic amyloidosis, Raise awareness in the medical field for an earlier diagnosis, Educate medical professionals through our Grand Rounds program and attendance at medical conferences and Empower patients through our comprehensive range of services, including accurate up to date information.

The Amyloidosis Foundation is committed to serving patient needs by supporting research and providing annual grants for junior research scientists whose research targets the challenges in the field of amyloidosis.

The Amyloidosis Foundation grant program has supported outstanding research in all forms of systemic amyloidosis. Through our research program we encourage, promote and invest in the medical study and exploration of the amyloidosis diseases.

The Amyloidosis Foundation has a very successful Grand Rounds program, as part of our commitment to raise awareness of the amyloidosis diseases. We will sponsor an expert in amyloidosis to speak to doctors and medical staff regarding the diagnostic tools, clinical protocols and treatment therapies that are currently available.

The foundation is dedicated to encouraging young scientists that show an interest in amyloidosis research, by providing travel grants to physicians and researchers who have completed their medical doctorate or fellowship within the past 10 years. These grants enable participation in the bi-annual International Amyloidosis Symposium.

This is a pivotal time in the history of the amyloidosis, with the approval of two drugs for ATTR in 2018, a third drug in 2019, and a number of new therapies on the horizon. Increasing the level of support is essential for research in these underserved diseases. Researchers, clinicians and partners in the biotech and pharmaceutical industries are working on the development of therapies that are changing the landscape and improving the outlook for patients.

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