Amyloidosis Foundation

Amyloidosis Foundation This is the Official page for The Amyloidosis Foundation.

The Amyloidosis Foundation began with the vision of two patients, Don Brockman and Dennis Krysmalski. Donโ€™s desire to support research and Dennisโ€™s commitment to support patients and increase awareness has been the driving force behind the foundation for the past decade. Donโ€™s widow, Mary Oโ€™Donnell, has picked up the mantle and led the foundation to become the success it is today.

๐Ÿฉ Happy National Donut Day from the Amyloidosis Foundation! ๐ŸฉTodayโ€™s a sweet reminder to take care of yourself and the p...
06/05/2026

๐Ÿฉ Happy National Donut Day from the Amyloidosis Foundation! ๐Ÿฉ

Todayโ€™s a sweet reminder to take care of yourself and the people you love. While youโ€™re enjoying your favorite donut, take a moment to check out the resources, support, and educational tools available through the Amyloidosis Foundation. From patient support to awareness and early detection information, weโ€™re here to help every step of the journey.

Learn more, get connected, and spread awareness today. ๐Ÿ’œ
www.amyloidosis.org

๐ŸŒŸTOMORROW'S SESSION๐ŸŒŸWednesday, June 3, 6:00 PM โ€“ 7:00 PM America/New_YorkCardiac Amyloidosis: New Strategies for Disease...
06/02/2026

๐ŸŒŸTOMORROW'S SESSION๐ŸŒŸ
Wednesday, June 3, 6:00 PM โ€“ 7:00 PM America/New_York

Cardiac Amyloidosis: New Strategies for Disease-Modifying Therapies

In this session Dr. Sarswat will present her approach to treat Amyloidosis patients with cardiomyopathy including managing symptoms.

Dr. Nitasha Sarswat is a cardiologist at UChicago Medicine specializing in advanced heart failure, transplantation, and cardiac amyloidosis. She combines clinical expertise with research to help patients better understand and manage the impact of amyloidosis on the heart.

To Register: https://us06web.zoom.us/meeting/register/PKBBXLBiTcSFqVOGUDP_vw

Zoom Meeting ID: 86202611160

๐Ÿšถโ€โ™€๏ธ๐Ÿšดโ€โ™‚๏ธ๐Ÿƒโ€โ™‚๏ธโ™ฟ The Amyloidosis Foundationโ€™s Run-Walk-Bike-Roll starts TODAY! ๐Ÿ’œWhether youโ€™re running, walking, biking, or...
06/01/2026

๐Ÿšถโ€โ™€๏ธ๐Ÿšดโ€โ™‚๏ธ๐Ÿƒโ€โ™‚๏ธโ™ฟ The Amyloidosis Foundationโ€™s Run-Walk-Bike-Roll starts TODAY! ๐Ÿ’œ

Whether youโ€™re running, walking, biking, or rolling, every mile helps raise awareness and support for those affected by amyloidosis. Join us in moving for a cause, honoring patients and caregivers, and making an impact together.

Letโ€™s get active, spread awareness, and show the strength of our community! ๐Ÿ’ช

Ready to participate? Lace up, gear up, and letโ€™s roll!
REGISTER HERE๐Ÿ‘‰๐Ÿผ https://bit.ly/2026VirtualWalk OR CLICK BELOW!

Walk or run or bike at your leisure to help raise awareness of amyloidosis, in your local park, or your neighborhood. Encourage your family and friends to register and participate.

Anselamimab is an investigational, potential first-in-class anti-fibril therapy designed to improve organ function by re...
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...

๐Ÿ’œ Join the Amyloidosis Foundationโ€™s Virtual Run โ€ข Walk โ€ข Bike โ€ข Roll! ๐Ÿ’œFrom June 1 through September 8, you can move you...
05/29/2026

๐Ÿ’œ Join the Amyloidosis Foundationโ€™s Virtual Run โ€ข Walk โ€ข Bike โ€ข Roll! ๐Ÿ’œ

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 โ€” every mile makes a difference!

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

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

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

๐ŸŒŸTOMORROW'S SESSION๐ŸŒŸWednesday, May 27 6:00 PM โ€“ 7:00 PM America/New_YorkHow genes are inherited in ATTR, what a genetic ...
05/26/2026

๐ŸŒŸTOMORROW'S SESSION๐ŸŒŸ
Wednesday, May 27 6:00 PM โ€“ 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

The Amyloidosis Foundation offices will be closed tomorrow, Monday, May 25, in observance of Memorial Day. We will resum...
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.

CPR Funds Now Open: Hepatocellular Carcinoma, Macular Degeneration, and Multiple Myeloma Health EquityThe specific eligi...
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.

๐ŸŽ— ๐“๐ก๐ข๐ฌ ๐ข๐ฌ ๐š ๐ ๐ซ๐ž๐š๐ญ ๐ฐ๐š๐ฒ ๐ญ๐จ ๐ก๐จ๐ง๐จ๐ซ ๐ฒ๐จ๐ฎ๐ซ ๐ฅ๐จ๐ฏ๐ž๐ ๐จ๐ง๐ž!With this link, you will be able to easily create a fundraiser for the Amy...
05/22/2026

๐ŸŽ— ๐“๐ก๐ข๐ฌ ๐ข๐ฌ ๐š ๐ ๐ซ๐ž๐š๐ญ ๐ฐ๐š๐ฒ ๐ญ๐จ ๐ก๐จ๐ง๐จ๐ซ ๐ฒ๐จ๐ฎ๐ซ ๐ฅ๐จ๐ฏ๐ž๐ ๐จ๐ง๐ž!
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/

๐ŸŒŸ TOMORROW'S SESSION ๐ŸŒŸWednesday, May 20 6:00 PM โ€“ 7:00 PM America/New_YorkJoin us for an intimate session where fellow a...
05/19/2026

๐ŸŒŸ TOMORROW'S SESSION ๐ŸŒŸ
Wednesday, May 20 6:00 PM โ€“ 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

Address

7151 N. Main Street , Suite 2
Clarkston, MI
48346

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Alerts

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