PLATINUM2021

Amyloidosis Foundation

aka Amyloidosis Foundation   |   Clarkston, MI   |  http://amyloidosis.org/

Mission

Supporting amyloidosis patients and families while promoting research, education and awareness.

Ruling year info

2005

President

Mary E. O'Donnell

Main address

7151 N. Main St. Suite 2

Clarkston, MI 48346 USA

Show more contact info

Formerly known as

Amyloidosis Research Foundation

EIN

20-0291856

NTEE code info

Fund Raising and/or Fund Distribution (H12)

Fund Raising and/or Fund Distribution (G12)

Alliance/Advocacy Organizations (P01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Sign in or create an account to view Form(s) 990 for 2020, 2019 and 2018.
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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

How to continue and improve the spreading of awareness of the rare disease amyloidosis

Our programs

SOURCE: Self-reported by organization

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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.

Population(s) Served
Adults

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).

Population(s) Served
Adults

Where we work

Our results

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

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.

Exhibiting at medical conferences and awarding research grants to promising research projects, also hosting Amyloidosis Grand Rounds throughout the country.

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

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

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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

  • Which of the following feedback practices does your organization routinely carry out?

    We don’t use any of these practices

  • 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

Amyloidosis Foundation
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build 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 directors
as of 01/05/2022
SOURCE: Self-reported by organization
Board chair

Mary O'Donnell

Amyloidosis Foundation

Term: 2007 -

Mary E. O'Donnell

Amyloidosis Foundation

Charlotte Haffner

Dante Burchi

Daniel Lenihan, MD

U of Washington St. Louis

Adrienne Molteni

Mark Sutherland

LPL Financial

Lori Lawter

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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

SOURCE: Self-reported; last updated 1/5/2022

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

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/05/2022

GuideStar 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

Policies and processes
  • 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.