Amyloidosis Support Group, Inc.

You Are Not Alone

aka ASG   |   Wood Dale, IL   |  www.amyloidosissupport.org

Mission

Amyloidosis Support Groups Inc., a 501 (c) 3 nonprofit corporation (will be referred to as the A.S.G. for this report) was formed for the primary purpose of starting and maintaining Amyloidosis Support Groups throughout the United States, dedicated to providing peer group support to patients, caregivers, families and friends of those touched by this life threatening disease . •To form Amyloidosis Support Groups where needed and to have all Amyloidosis Support Groups be self-sustaining through donations •To fund and maintain libraries of educational materials for all support groups. •To maintain a 24/7 toll free "Hot/Help Line" to answer all support inquires. •To provide on-going maintenance and informational updates on the A.S.G. web-site (www.amyloidosissupport.org).

Ruling year info

2005

Principal Officer

Muriel Finkel

Main address

232 Orchard Dr

Wood Dale, IL 60191 USA

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EIN

20-2909816

NTEE code info

Health Support Services (E60)

Counseling Support Groups (F60)

Alliance/Advocacy Organizations (H01)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

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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?

Amyloidosis Support Groups

To form Amyloidosis Support Groups where needed
To have all Amyloidosis Support Groups be self sustaining through donations and grants.
To fund and maintain libraries of educational materials for all support groups
To fund group projects that will help in spreading awareness and fundraising
To help finance the annual educational retreat for training new and current group leaders and facilitators

Population(s) Served

video and booklet can be seen on
www.AmyloidAware.com

Population(s) Served

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 free participants in conferences

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 have support meetings in 29 cities. In 2004 we met once in 12 cities and an average of a dozen at each meeting. In 2017 we met in 29 cities 2-3 times a year with an average of 50 at each meeting.

Total number of conferences held

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

Context Notes

We do not measure visitors to our website but we have a site with a video and booklet we helped to produce called AmyloidAware.com and that is counted each time it is clicked. We are over 70,000 hits.

Number of clients participating in support groups

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 meet in person, online and on Facebook. Some do one, some two and some all three. we entered the total of all as accurately as we could estimate.

Number of people on the organization's email list

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 email all about support meetings, new clinical trials, treatments etc. This is the total in our Eblast data.

Number of online groups served

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 have online groups for all types of amyloidosis, and ATTR.

Number of Facebook followers

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 have 10 groups on Facebook for all types of the disease and for those who have lost loved ones. We are now over 3000.

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.

Start at least one new meeting a year. We are now in over 20 cities but so many need our help, guidance and direction. We are called but our hands are tied until we have enough families and connections to doctors and hospitals that can help us to achieve this goal.
We knew we needed to get something going again in the Carolinas.

We made contact with two hospitals and sets of doctors in the Carolinas and two contacted us. We were able to work with them and their patients and will be starting a new meeting in 2015. We will be alternating between Duke in the Triangle area (Raleigh/Durham) and Carolinas Health Care in Charlotte.

Our facilitator in Georgia is training or newest facilitator to cover this meeting and we are starting to put the word out. There was a fundraiser and donations made to cover the expenses of this meeting.

We just have to tie up the loose ends and pick dates and it will be a go .We have the venues, and the guest doctors and the minimum amount of families. This will be an ongoing and exciting meeting as are all of them.

Financials

Amyloidosis Support Group, Inc.
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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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  • 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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Amyloidosis Support Group, Inc.

Board of directors
as of 3/2/2020
SOURCE: Self-reported by organization
Board chair

Muriel Finkel

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? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No