Amyloidosis Foundation
Programs and results
What we aim to solve
How to continue and improve the spreading of awareness of the rare disease amyloidosis
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Research Grant Program
Each year the foundation accepts applications for our Research Grant Program. In 2017, six $50,000 research grants were awarded.
Webinars
We host webinars with physicians who are experts in the various types of amyloidosis. There is no cost to join and they are posted on our website after the event as a resource.
Information Publications
The foundation provides several publications for both patients and physicians about the different types of amyloidosis and it's treatment. They are available free of charge and we mail to anyone who requests information. These are also available on our website.
Exhibit at Medical Conferences
To raise awareness of amyloidosis in the medical community we exhibit at several conferences throughout the year. These include: American College of Cardiology (ACC), American Society of Nephrology - Kidney Week, American Association of Nurse Practitioners (AANP), American Society of Hematology (ASH) and the Heart Failure Society of America (HFSA).
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of overall donors
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of first-time donors
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Average number of dollars given by new donors
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of groups/individuals benefiting from tools/resources/education materials provided
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of return website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of unique website visitors
This metric is no longer tracked.Totals By Year
Type of Metric
Input - describing resources we use
Direction of Success
Increasing
Number of community events or trainings held and attendance
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
This is our Grand Rounds Program for physicians all live events have been cancelled since the beginning of the pandemic with uncertain plans to resume
Number of products distributed
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
We publish booklets with information on amyloidosis.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Raise awareness of the amyloidosis diseases and support research striving to find a cure. We accomplish this by co-hosting Grand Rounds and exhibiting at medical conferences.
What are the organization's key strategies for making this happen?
Exhibiting at medical conferences and awarding research grants to promising research projects, also hosting Amyloidosis Grand Rounds throughout the country.
What are the organization's capabilities for doing this?
We have knowledgeable volunteers to spread awareness, and a compassionate and generous donor base to support our research grant program. We also have a dedicated group of amyloid physicians who are willing to travel around the country speaking at Amyloidosis Grand Rounds
What have they accomplished so far and what's next?
In 2013 we doubled the number of Grand Rounds over 2012 to 8 reaching an average of 50 physicians at each meeting. At the medical conferences we average distribution of over 500 informational packages. In 2017 we awarded six research grants.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To understand people's needs and how we can help them achieve their goals
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Which of the following feedback practices does your organization routinely carry out?
We don’t use any of these practices
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
Amyloidosis Foundation
Board of directorsas of 11/29/2023
Mary O'Donnell
Amyloidosis Foundation
Term: 2007 -
Mary E. O'Donnell
Amyloidosis Foundation
Dante Burchi
Daniel Lenihan, MD
U of Washington St. Louis
Adrienne Molteni
Mark Sutherland
LPL Financial
Lori Lawter
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? No -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
No data
Race & ethnicity
No data
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 01/05/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.