2024 3rd annual tournament sEPTEMBER 27, 2024 cancelled

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Together, We'll Make a Difference!

3rd annual Steve Penland Golf Tournament Cancellation announcement

9/13/24: We are sorry to announce that the Penland Memorial Golf Tournament and dinner that was scheduled for Friday, September 27th, 2024 has been canceled. We will do our best to regroup and bring this tournament back in 2025. We hope you will consider participating again.

For refunds, please email. You will have the option to refund or donate all or part of your registration fee to the Amyloidosis Foundation in Steve’s honor.

info@amyloidosis.org

The 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 16 years. Don’s widow, Mary O’Donnell, has led the foundation to become the

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.

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facts about amyloidosis

The Amyloidosis Foundation

Clear information on the main amyloidosis diseases, including symptoms, diagnosis, treatments and FAQs.

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 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.

There are other types of amyloidosis diseases as well, which will be outlined on this website.

Go directly to your amyloid type and find specific information on symptoms, diagnosis, and treatments for your type.

Hereditary

Wild-Type

Other

A Rare Disease

Amyloidosis has been labeled as a rare disease by the U.S. Office of Rare Diseases (ORD), which is a segment of the National Institutes of Health (NIH). It is also referred to as an “orphan” disease. As a classified rare disease by the U.S. government, this means that it is estimated that all of the types of Amyloidosis combined affect less than 200,000 people in the U.S. population.

As research continues, this rare classification may change. Many experts suspect that some of the amyloidosis diseases are not that rare — just rarely diagnosed. As funding increases for research, our understanding of amyloid diseases will lead us in new directions.

A major challenge is the current lack of early diagnosis for a patient with amyloidosis. This is a key factor. Awareness of all the amyloidosis diseases by the medical community and by the general public is essential in order to turn this around.

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Together, We'll Make a Difference!

Together, We'll Make a Difference!

Welcome

3rd annual Steve Penland Golf Tournament Cancellation announcement

The Amyloidosis Foundation

The Amyloidosis Foundation

The Amyloidosis Foundation

facts about amyloidosis

The Amyloidosis Foundation

The Amyloidosis Foundation

Ways to donate to the Amyloidosis Foundation

Photo Gallery

Together, We'll Make a Difference!

Together, We'll Make a Difference!

Welcome

3rd annual Steve Penland Golf Tournament Cancellation announcement

The Amyloidosis Foundation

The Amyloidosis Foundation

The Amyloidosis Foundation

facts about amyloidosis

The Amyloidosis Foundation

The Amyloidosis Foundation

Ways to donate to the Amyloidosis Foundation

Photo Gallery

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