Amyloidosis Foundation

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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. Don’s desire to support research and Dennis’s commitment to support patients and increase awareness has been the driving force behind the foundation for the past decade. Don’s widow, Mary O’Donnell, has picked up the mantle and led the foundation to become the success it is today.

S*x differences in amyloid transthyretin cardiomyopathy National Amyloidosis Centre staging at diagnosis: an analysis fr...
10/16/2026

S*x differences in amyloid transthyretin cardiomyopathy National Amyloidosis Centre staging at diagnosis: an analysis from a large single-center cohort

Female patients present with ATTR-CM at significantly later National Amyloidosis Centre (NAC) staging system than men. Despite this, they have a similar mortality rate. Findings may demonstrate that the NAC stage overestimates disease severity in female patients or, alternatively, that biological mechanisms confer a less aggressive disease phenotype in female patients despite advanced disease staging.
READ MORE HERE: https://pmc.ncbi.nlm.nih.gov/articles/PMC13635298/

The annual Medicare Open Enrollment period is here! Whether you are completely new to Medicare or looking to optimize yo...
10/15/2026

The annual Medicare Open Enrollment period is here!

Whether you are completely new to Medicare or looking to optimize your current coverage for 2027, taking time to review your options now can save you money and time next year and ensure you have the coverage you need.

To help you navigate your options, the expert patient advocates at PAF have put together five essential tips for this enrollment season – with expanded resources to accompany each one.

1. Learn the lingo
Out-of-pocket costs hit your wallet differently depending on whether they are premiums, deductibles, coinsurance, or copays. Understanding how these terms impact your budget is the first step to choosing the right plan.

2. Know your plan options
Original Medicare includes Part A (hospital) and Part B (medical). If you stick with Original Medicare, you will need a standalone Part D plan for medications, and you may want a supplemental Medigap policy to cover out-of-pocket gaps. Alternatively, you can choose a Medicare Advantage plan, which may offer additional benefits but may also come with network restrictions.

3. Don’t forget your medications
With original Medicare and some Medicare Advantage plans, you’ll still need a Part D drug plan. Before choosing, make a complete list of your current medications and verify that they are included in the plan's specific "formulary" (list of covered drugs). Look out for restrictions like prior authorizations.

4. Know your limits
In 2027, the annual out-of-pocket limit for covered Part D prescription drugs is $2,400, compared to $2100 in 2026. Once you reach the limit, you will not pay additional out-of-pocket costs for covered Part D medications for the rest of the year. There is also a $35 cap on covered insulin products.

5. Consider a Prescription Payment Plan
If you face high upfront costs at the pharmacy, the Medicare Prescription Payment Plan may be right for you. This voluntary program allows you to spread your out-of-pocket Part D drug costs over predictable monthly bills throughout the year. While it doesn't lower your total costs, it can significantly help your monthly cash flow.

Learn more here:

Read our guides to health plan open enrollment. Learn how to review your health insurance coverage and enroll in a plan for the coming year.

The Scottish Medicines Consortium (SMC) has accepted vutrisiran sodium (Amvuttra, Alnylam UK Ltd) for restricted use in ...
10/14/2026

The Scottish Medicines Consortium (SMC) has accepted vutrisiran sodium (Amvuttra, Alnylam UK Ltd) for restricted use in NHS Scotland as monotherapy in adults with wild-type or hereditary transthyretin amyloidosis with cardiomyopathy (ATTR-CM).

READ MORE HERE:

The quarterly injection joins tafamidis as an option for ATTR-CM, but only under a patient access scheme or at an equivalent or lower price.

❤️ Connect, Learn & Find SupportIn partnership with the Amyloidosis Foundation, Somebody To Talk To hosts several sessio...
10/13/2026

❤️ Connect, Learn & Find Support

In partnership with the Amyloidosis Foundation, Somebody To Talk To hosts several sessions each month covering a variety of topics related to amyloidosis.

📅 Check out the session calendar! Click the link to explore upcoming sessions and see the different topics being offered.

These sessions are a great opportunity to learn, connect with others, ask questions, and find support throughout your amyloidosis journey.

🔗 View the calendar and find a session that’s right for you!
https://somebodytotalkto.com/session-calendar

10/11/2026

One of our staff members recently wrote a blog article for 'Health Policy Today'. Check it out!

I have spent years advocating for patients living with amyloidosis, and one thing has become clear: for many patients, the hardest part is not always the disease itself, but rather the fight to access treatment after finally receiving a diagnosis. 

10/10/2026

From FREE webinars that will provide practical information for individuals diagnosed with amyloidosis and their caregivers on navigating health insurance and access to care. Topics will include health insurance options, including Medicare, making enrollment decisions, accessing second opinions, and strategies to address barriers to care.

The webinars will be offered both virtually and in person in three locations:

October 26 – Buffalo, New York
October 28 – Houston, Texas
October 29 – Orlando, Florida
You can learn more and register here:

An amyloidosis diagnosis can bring practical questions about health insurance and accessing care. Learn what to consider and find resources to help you make informed decisions about your coverage and care.

10/08/2026

Alnylam Pharmaceuticals, Inc. announced the launch of AMVUTTRA “Play by Play,” a U.S. educational initiative featuring former professional athletes living with cardiomyopathy of transthyretin-mediated amyloidosis, or ATTR-CM, along with members of their care teams.

The initiative is intended to raise awareness of ATTR-CM symptoms and encourage patients to discuss possible signs of the disease with healthcare professionals.
READ MORE HERE:

Cambridge, Mass. — Alnylam Pharmaceuticals, Inc. announced the launch of AMVUTTRA “Play by Play,” a U.S. educational initiative featuring former professional athletes living with cardiomyopathy of transthyretin-mediated amyloidosis, or ATTR-CM, along with members of their care teams. The initi...

❤️ Connect, Learn & Find SupportIn partnership with the Amyloidosis Foundation, Somebody To Talk To hosts several sessio...
10/06/2026

❤️ Connect, Learn & Find Support

In partnership with the Amyloidosis Foundation, Somebody To Talk To hosts several sessions each month covering a variety of topics related to amyloidosis.

📅 Check out the session calendar! Scan the QR code or click the link to explore upcoming sessions and see the different topics being offered.

These sessions are a great opportunity to learn, connect with others, ask questions, and find support throughout your amyloidosis journey.

🔗 View the calendar and find a session that’s right for you!
https://somebodytotalkto.com/session-calendar

A Study to Evaluate the Safety and Tolerability of CAEL-101 in Patients With AL Amyloidosis: The investigators concluded...
10/04/2026

A Study to Evaluate the Safety and Tolerability of CAEL-101 in Patients With AL Amyloidosis:

The investigators concluded that anselamimab was well tolerated in this small phase 2 study, with common adverse events generally consistent with AL amyloidosis or accompanying anti-plasma-cell therapy. The study's limitations include its small sample size, open-label/non-randomized design, lack of placebo control, and concomitant treatments.

Organ responses: Among evaluable participants, the best reported cardiac response was 47.4% at Week 50, while the best renal response was 85.7% at Weeks 62 and 98. These are exploratory organ-response findings rather than evidence from a randomized comparison.
READ MORE FROM clinicaltrials.gov:
https://clinicaltrials.gov/study/NCT04304144

10/02/2026

The company announced positive Phase II data for the BCMA-directed CAR-T therapy in patients with relapsed/refractory AL amyloidosis.

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

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