Resources

Compass is a newsletter for amyloidosis research updates with the goal of keeping the amyloidosis community informed of ARC’s research and initiatives. The June 2021 edition focuses on the recently completed Amyloidosis Research Consortium Cardiac Amyloidosis Survey.

This ARC Talks Webinar covers everything that patients and their families should know about the role of stem cell transplantation in AL amyloidosis. Dr. Sandy Wong, Director of the Amyloidosis Program at the University of California San Francisco, describes the process of stem cell transplantation for AL amyloidosis patients. Terry Fogaren, a nurse practitioner from Tufts University Medical Center, shares information on how to prepare for and best recover from the procedure. The presentations are followed by a Q&A session from our live presentation on May 13, 2021.  

AL amyloidosis is a serious disease. However, many patients benefit from current therapies, with their lives improved and prolonged, often for many years.

A diagnosis of light chain amyloidosis (AL amyloidosis) can be confusing and stressful, bringing up many feelings and questions. It is important to learn as much as possible about the disease, its treatment, and how it might affect you.

We live in a time of rapid advances in genetic know-how and pharmacological technologies. The pace of discovery is accelerating, driving the development of new therapies, with 3 newly approved treatments. The exact course of hATTR varies with each patient, but the outlook holds promise for all. This booklet is designed as a comprehensive guide to help you and your family navigate treatment resources and options that would be most effective for you.

Hereditary transthyretin amyloidosis (hATTR) is a rare, systemic disease passed down through families. Caused by genetic mutations in the transthyretin (TTR) gene, it leads to a buildup of abnormal proteins called amyloid in one or more organs and tissues, impairing their function. Left untreated, hATTR can cause life-threatening complications. Early diagnosis and treatment are critical to prevent or delay progression of hATTR.

Wild-type transthyretin amyloidosis (ATTRwt) is an age-related disease caused by transthyretin (TTR) proteins that become unstable, misfold, and build up in organs, impairing their function. It is a slowly progressive condition that affects older people, most often Caucasian men over 65 years of age. Heart disease is the hallmark of ATTRwt, but it is commonly preceded by other conditions, such as carpal tunnel syndrome or spinal stenosis.

In this ARC Talks webinar, Dr. Kelsey Barrell from the University of Utah explains what causes neuropathy and other neurological symptoms in amyloidosis patients and offers suggestions to help manage these symptoms.