7151 N. Main St. Ste. 2 Clarkston, MI 48346
248-922-9610

Virtual Run

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2026 Spring Newsletter

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AL Amyloidosis

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Amyloidosis Awareness Items

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Hereditary Amyloidosis

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The Amyloidosis Channel

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Patient Education Activity

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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.

Featured Patient Story

My hTTR-PN Journey

Tisha Downing

About a year ago, my health took a sudden and frightening turn. I had been living with Ehlers-Danlos Syndrome (EDS) and POTS, so I was no stranger to chronic illness. But this felt different. My symptoms quickly escalated beyond anything I had experienced before. I fainted in my bathroom, resulting in a minor concussion. My shortness of breath became so...
Read the Full Story

Latest Headlines

CARES Phase III clinical program did not meet primary endpoint in overall light chain amyloidosis population, however, demonstrated anselamimab as potential first anti-fibril therapy in kappa light chain amyloidosis

May 29, 2026

PUBLISHED 29 May 2026 AstraZeneca (LSE/STO/NYSE: AZN) is a global, science-led biopharmaceutical company that focuses on the discovery, development, and commercialization of prescription medicines in Oncology, Rare Disease, and BioPharmaceuticals, including Cardiovascular, Renal & Metabolism, and Respiratory & Immunology....

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Calendar & Upcoming Events

Virtual Run

When


June 1, 2026 - September 7, 2026    

12:00 am

‘Run for Your Life’ Run-Walk-Roll-Bike event!

Registration is now open for the 2026 Run-Walk-Roll-Bike event! Join the Amyloidosis Foundation as we come together to raise awareness and support vital amyloidosis education, advocacy, patient support, and research efforts.

This annual virtual event allows you to participate from anywhere while making a meaningful impact at your own pace.

Event Details:

🗓️ June 1, 2026 – September 8, 2026

🏃 Run, walk, bike, or roll—your choice, your pace

🎁 All registrants receive an event T-shirt

Ready to get involved?

✅ Register today: https://bit.ly/2026VirtualWalk

✅ Invite friends and family to join your team

✅ Make a donation to support amyloidosis research and education

✅ Share your journey on social media using #RunForYourLife2026

Every mile, step, and act of support helps bring hope to patients and families affected by amyloidosis.

The role of upfront autologous SCT for primary AL amyloidosis

When


July 29, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, July 29th at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

The role of upfront autologous SCT for primary AL amyloidosis

Join us for an informative session with Dr. Tibor Kovacsovics on the role of upfront autologous stem cell transplantation in treating primary AL amyloidosis. Learn how this treatment may affect outcomes, what patients can expect during the process, and how it fits into overall disease management. Helpful for patients and caregivers.

Dr. Tibor Kovacsovics is Chief of Hematology and Medical Director of Leukemia at City of Hope Cancer Center Phoenix. A hematologist-oncologist with 20 years of clinical research experience, he specialises in AML, ALL, stem cell transplantation, and amyloidosis. He trained at Harvard Medical School/MGH/Brigham and Women’s, co-founded the Utah Amyloidosis Program at Huntsman Cancer Institute, and has served as principal investigator on dozens of landmark hematology studies.

Speaker: Tibor Kovacsovics, MD

Diagnosis of Cardiac Amyloidosis

When


July 22, 2026    

6:00 pm - 6:45 pm

Webinar Session: Wednesday, July 22nd at 6 PM (ET) Zoom Meeting

(These sessions will not be recorded due to patient involvement and HIPAA laws)

To Register HERE

Diagnosis of Cardiac Amyloidosis

Join us to understand Cardiac Amyloidosis, a rare heart condition. Learn about its symptoms, treatment options, and management strategies. Get support and share experiences in a caring, informative environment. This session will empower you and your loved ones to navigate this journey with confidence.

Driven by his compassion for those fighting cancer and devotion to precision, Faizi Jamal, M.D., is committed to providing the most optimal cardiovascular care for his patients. Before joining City of Hope, Dr. Jamal worked for five years at the Northwestern University Feinberg School of Medicine in Chicago. He received his medical degree from the University of California Irvine’s School of Medicine and completed his residency and fellowship at Cedars-Sinai Medical Center in Los Angeles.

Speaker: Dr. Faizi Jamal, MD

Amyloidosis Videos

This section features a collection of informative videos that provide valuable insights into amyloidosis. Watch expert-led content on various aspects of the condition, from diagnosis to treatment, to deepen your understanding and stay informed.

Featured Product

Zebra T Shirt

FLASH SALE:  Pick up our Zebra Shirt for $15.00 while supplies last! Wear our zebra logo shirt and increase amyloidosis awareness in your community! 50% cotton, 50% polyester
$15.00
S and M

Our Latest Webinar

Cardiac Amyloidosis – What You Need To Know

Hasan K. Siddiqi, MD, MSCR, FACC

Vanderbilt Health, Nashville, TN

May 7, 2026

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