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

Immix Biopharma Announces 95% Complete Response Rate in Interim Update From relapsed/refractory AL Amyloidosis Clinical Trial NEXICART-2

July 23, 2026

– Of first 20 patients, all four MRD-negative patients have converted to complete response (CR) –

– CR rate now 95% (19 of 20 patients) –

– All CRs reached within 1 year of follow-up post-dosing –

...
Read Full Article

Calendar & Upcoming Events

Amyloidosis Support Group Meeting – Nashville

When


August 15, 2026    

11:30 am - 2:30 pm

Where

Sperry's Restaurant Cool Springs
650 Frazier Drive, Franklin, TN, 37067

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Amyloidosis Support Group Meeting – Nashville, TN

When: August 15, 2026  11:30 am – 2:30 pm CT

Where:  Sperry’s Restaurant Cool Springs  650 Frazier Drive  Franklin, TN

Speakers: 

Margie Gale, Vanderbilt Worklife Connections Counselor

Alison Keenan, Patient

Focus for this meeting is patient well being.

RSVP:  Adreinne Molteni @ [email protected] or 615-497-1770

Complimentary lunch will be provided.

Virtual Run

When


July 1, 2026 - September 8, 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.

PLEASE NOTE:  Registrants outside the United States will be required to pay an additional shipping fee for their T-shirt.

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

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

Red Light Bulb

**LOW STOCK** Light the night for Amyloidosis with this red light bulb to commemorate amyloidosis month in March. Light up your home or business with red lights to raise awareness. Standard size LED 9 watt (equivalent to 60 watt) red light bulb
$6.00

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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