Amyloidosis Foundation

05/30/2026

Anselamimab is an investigational, potential first-in-class anti-fibril therapy designed to improve organ function by reducing or depleting amyloid deposits in the tissues and organs of patients living with AL amyloidosis. By binding with specificity to targets within amino acids on misfolded amyloid fibrils, anselamimab promotes destruction and clearance of amyloid deposits, while sparing native free light chains from destruction. Anselamimab has been granted Fast Track Designation by the US Food and Drug Administration (FDA) and received Orphan Drug Designation from the US FDA, European Commission and the Ministry of Health, Labour and Welfare of Japan for the treatment of AL amyloidosis.

Read the full press release here:

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 PUBLISHED 29 May 2026 Anselamimab demonstrated 62% improvement in survival and 71% r...

05/29/2026

💜 Join the Amyloidosis Foundation’s Virtual Run • Walk • Bike • Roll! 💜

From June 1 through September 8, you can move your way to help raise awareness and support for those affected by amyloidosis. Whether you run, walk, bike, or roll — every mile makes a difference!

✅ Participate from anywhere
✅ Set your own pace and goals
✅ Support patients, families, education, and research
✅ Share your journey and inspire others

Together, we can bring hope, awareness, and progress to the amyloidosis community.

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

05/26/2026

🌟TOMORROW'S SESSION🌟
Wednesday, May 27 6:00 PM – 7:00 PM America/New_York

How genes are inherited in ATTR, what a genetic counselor does, and demystifying genetic testing.

Join us to uncover the basics of genetic inheritance in ATTR amyloidosis, where we'll explain how genes play a role in this condition. Learn from genetic counselors about their role in guiding and supporting patients and families through the genetic testing process. This session aims to demystify genetic testing, making it more understandable and less daunting, and will provide you with the knowledge and confidence to discuss these topics with your healthcare provider.

Rachel is a board-certified genetic counselor at the University of Chicago. She sees patients in the Cardiovascular Genetics Clinic and the Amyloidosis Clinic as well as at-risk family members, to have personalized discussions on the impact of genetic testing in personal health choices. She is currently the president-elect of the Illinois Society of Genetics Professionals (ISGP) and was previously the co-chair of the Education Committee. As a part of her role within ISGP, she is working tirelessly to move legislation through the IL General Assembly to protect Illinois residents from genetic discrimination. Rachel is also an active member the National Society of Genetic Counselors (NSGC) and the Heart Rhythm Society (HRS).

To Register: https://us06web.zoom.us/meeting/register/KOssLNsvSZa5MKqkHnvb2A
Zoom Meeting ID: 84295306143

05/24/2026

The Amyloidosis Foundation offices will be closed tomorrow, Monday, May 25, in observance of Memorial Day. We will resume normal business hours on Tuesday, May 26. We appreciate your understanding and wish everyone a safe and meaningful holiday.

05/22/2026

CPR Funds Now Open: Hepatocellular Carcinoma, Macular Degeneration, and Multiple Myeloma Health Equity

The specific eligibility criteria for each fund can be found at https://copays.org/funds/. For personal assistance with the application process please contact us toll-free at 866-512-3861 or visit our application portals at https://portal.copays.org/ #/login, with access available for patients, providers, and pharmacies.

05/22/2026

🎗 𝐓𝐡𝐢𝐬 𝐢𝐬 𝐚 𝐠𝐫𝐞𝐚𝐭 𝐰𝐚𝐲 𝐭𝐨 𝐡𝐨𝐧𝐨𝐫 𝐲𝐨𝐮𝐫 𝐥𝐨𝐯𝐞𝐝 𝐨𝐧𝐞!
With this link, you will be able to easily create a fundraiser for the Amyloidosis Foundation FREE of cost to you and us! Share it with supporters and encourage them to help you raise money on Facebook.
CLICK HERE=> https://www.facebook.com/fund/amyloidosisfdn/

05/19/2026

🌟 TOMORROW'S SESSION 🌟
Wednesday, May 20 6:00 PM – 7:00 PM America/New_York

Join us for an intimate session where fellow amyloidosis patients and caregivers share valuable lessons from their journeys. This gathering is a chance to exchange personal insights and practical tips that only experience can teach. Please bring one lesson you've learned to share with the group, as we cultivate a supportive space to learn from each other and strengthen our community. Together, we can enhance our ability to manage amyloidosis with knowledge, empathy, and collective wisdom.

Stacey Goodman, MD, completed her hematology training at the NIH and Vanderbilt University before joining the faculty in 1993. She helped create and lead the Vanderbilt Amyloidosis Multidisciplinary Program (VAMP) until her retirement in 2021. She currently serves as a member of the board of directors at the Amyloidosis Foundation.

To Register: https://us06web.zoom.us/meeting/register/PZukDgvOShWIQxC856wbMQ
Zoom Meeting ID: 83968513001

05/16/2026

🚲🏃🏼‍♀️ COMING SOON — RUN FOR YOUR LIFE! 🧑🏼‍🦽🚶🏼‍♂️
REGISTRATION IS OPEN!

Join the Run / Walk / Bike / Roll Challenge and move your way — wherever and whenever works for you!

📅 Complete your challenge anytime between
June 1, 2026 – September 8, 2026

✨ Participate at your own pace
✨ Choose from 2 exclusive t-shirt styles
✨ FREE event t-shirt included with registration!

Whether you run, walk, bike, or roll — every mile makes a difference 💙

👇🏼 REGISTER TODAY 👇🏼
https://secure.qgiv.com/for/amyfound/event/2025k1virrunfuncop/

05/15/2026

REGISTRATION IS OPEN!!!
Run/Walk/Bike/Roll at your leisure, while helping to raise funds for research!
REGISTER HERE 👇🏼
bit.ly/2026VirtualWalk

05/15/2026

Energy Conservation & Pacing With Amyloidosis

Adopt the "spoon theory" approach: view your energy as a limited set of spoons you must spend wisely each day.

Prioritize & Postpone: Focus on essential tasks and delay less critical ones for days when you feel stronger.

Take Scheduled Breaks: Instead of pushing until you are exhausted, take 5–10 minute rest breaks every hour or after 20–30 minutes of activity.

Sit When Possible: Use a stool or chair for everyday chores like showering, cooking, or folding laundry to reduce exertion.

Timing: Schedule demanding activities for times when you naturally have more energy, such as right after breakfast.