PLATINUM2023

Aplastic Anemia and MDS International Foundation

Answers, Support and Hope

aka AAMDSIF   |   Bethesda, MD   |  www.aamds.org
GuideStar Charity Check

Aplastic Anemia and MDS International Foundation

EIN: 52-1336903


Mission

The Aplastic Anemia and MDS International Foundation is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. The Foundation provides answers, support, and hope to thousands of patients and their families around the world through the three phases of bone marrow failure diseases: the life-changing phase of diagnosis; the life-threatening phase of treatment; and the life-long phase of living with a chronic disease.

Ruling year info

1984

CEO and Executive Director

Brad A. Wong

Main address

4330 East West Highway Suite 230

Bethesda, MD 20814 USA

Show more contact info

Formerly known as

Aplastic Anemia Foundation of America

EIN

52-1336903

Subject area info

Diseases and conditions

Population served info

Adults

Caregivers

People with diseases and illnesses

Academics

NTEE code info

Specifically Named Diseases (G80)

Alliance/Advocacy Organizations (G01)

Specifically Named Diseases Research (H80)

What we aim to solve

SOURCE: Self-reported by organization

More than 20,000 people are diagnosed each year with a bone marrow failure disease or a rare blood cancer. AAMDSIF provides patients, families and caregivers with evidence-based education on diagnosis, treatment and wellness topics. AAMDSIF also supports and promotes scientific research through scientific symposiums, research grants and publications.

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?

Patient Education & Support

AAMDS offers patients, families and caregivers numerous educational options including the Helpline (telephone, email, chat), virtual support groups, online and print publications, regional hybrid Patient & Family Conferences, webinars, podcasts, live broadcasts of scientific symposia, email updates on clinical trials, educational opportunities, treatment updates and other news.

Population(s) Served
Caregivers
Chronically ill people
Families
Non-adult children
Parents

AAMDSIF offers accredited educational programs to provide the latest information on the diagnosis, genetic characteristics, pathology and management of bone marrow failure diseases.

Population(s) Served
Adults
Academics

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.

Total number of classes offered

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Patient Education & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AAMDSIF offers free webinars and expert interviews for patients, families and caregivers featuring world experts on bone marrow failure disease.

Total Patients Served by Patient & Family Services

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Patient Education & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Direct patient, family and caregiver assistance via Helpline, webchat, new patient information packets (print/digital), social media messages and other assistance requests.

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health, Adults

Related Program

Patient Education & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Decreasing

Context Notes

Unique page views for www.aamds.org.

Number of unique website visitors

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, Health

Related Program

Patient Education & Support

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Context Notes

Total number of unique visitors to www.aamds.org

Number of conference attendees

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Patient Education & Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AAMDSIF offers free Patient & Family Conferences each year with expert medical professionals teaching sessions on rare blood cancer/bone marrow failure. In 2022, all conferences were hybrid.

Number of conferences held

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics

Related Program

Health Professional Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AAMDSIF hosts regional conferences and symposia at national medical meetings for health professionals. Attendance is available via livestream.

Total dollar amount of grants awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Military personnel, Chronically ill people

Related Program

Health Professional Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AAMDSIF continues to be re­spon­si­ble for advocating for the Con­gres­sion­ally Directed Medical Research Program (CDMRP) for Bone Marrow Failure research to help find cures for BMFDs.

Number of health education trainings conducted

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics

Related Program

Health Professional Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

AAMDISF sponsors continuing education programs for health care professionals including physicians and nurses. This includes webinars, conferences and symposia.

Total amount of grants awarded by AAMDSIF in the area of bone marrow failure research.

This metric is no longer tracked.
Totals By Year
Population(s) Served

Academics

Related Program

Health Professional Programs

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

AAMDSIF awards direct research grants in the area of bone marrow failure disease.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

As the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH), and related bone marrow failure diseases, the Aplastic Anemia and MDS International Foundation strives to be the resource of choice for patients and their families living with these diseases. AAMDSIF is working to increase patient and health professional knowledge of bone marrow failure diseases, provide patient education and support, to increase public awareness and to support basic and clinical research.

>Increase awareness of bone marrow failure diseases among health providers at all levels in order to accelerate time-to-diagnosis and treatment to improve clinical outcomes, and to enhance patient care.

>Promote, fund, and administer promising basic, clinical, and translational research initiatives with the longer term goal of finding cures for bone marrow failure diseases.

>Increase awareness and understanding of bone marrow failure diseases among the public-at-large.

>Develop and sustain accessible support networks and services for patients, family members, and/or caregivers.

> Join with other advocacy organizations to identify and pursue selected legislative and regulatory issues and opportunities at the federal and state level that advance or affect research and treatment related to bone marrow failure diseases.

AAMDSIF has 8 employees, assisted by volunteers throughout the world.

AAMDSIF's Board of Directors provides financial and strategic oversight and is comprised of 13 community members and business leaders, each of whom has a connection to bone marrow failure disease.

AAMDSIF's Medical Advisory Board (MAB) includes experts from the nation's leading medical and research institutions. This 26-member board advises and provides professional and technical expertise to the AAMDSIF Board of Directors and staff. The MAB is also responsible for peer review of research grant applications and recommendations for funding.

A 20-member Patient Advisory Council serves as a resource in the development and review of patient education programs and materials.

AAMDSIF hosts hybrid Patient & Family Conferences several times each year.

* AAMDSIF has updated our website (www.aamds.org) to be fully accessible in more than 100 languages.

* AAMDSIF hosts free webinars (live and recorded) for patients, families and caregivers to better understand bone marrow failure disease. In 2022, we provided a platform that is globally accessible by video and/or phone.

* AAMDSIF provides free scientifically accurate, evidence based patient education materials on our website for digital download. AAMDSIF also ships print editions to healthcare centers, research institutions and patients.

* Due to our increased reach using virtual platforms, we will continue providing conferences and symposia using a hybrid format expanding access and reach.

* Virtual format of support groups has allowed us to increase the number and variety of support groups offered, enabling patients and families to connect with each other, share information, and raise awareness in their communities.

* AAMDSIF continues to provide print/digital publications including medical research summaries, patient guides. symposia summaries and fact sheets for patients and healthcare professionals.

* AAMDSIF has made more than $5.5 million in research grants to 100 researchers in the area of bone marrow failure disease.

* AAMDSIF hosts and supports ongoing medical education opportunities for health care professionals through symposia, webinars and conferences.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, 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 collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, It is difficult to find the ongoing funding to support feedback collection, It is difficult to identify actionable feedback

Financials

Aplastic Anemia and MDS International Foundation
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

12.38

Average of 5.55 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

13.9

Average of 5.8 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

12%

Average of 17% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Aplastic Anemia and MDS International Foundation

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Aplastic Anemia and MDS International Foundation

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Aplastic Anemia and MDS International Foundation

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Aplastic Anemia and MDS International Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

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Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation -$226,238 $1,219,894 $1,746,460 $1,235,666 $711,339
As % of expenses -5.0% 40.5% 59.9% 59.1% 28.1%
Unrestricted surplus (deficit) after depreciation -$267,257 $1,173,601 $1,707,962 $1,201,751 $680,724
As % of expenses -5.8% 38.4% 57.8% 56.6% 26.6%
Revenue composition info
Total revenue (unrestricted & restricted) $3,056,482 $2,879,436 $4,687,320 $3,484,930 $3,208,985
Total revenue, % change over prior year -43.6% -5.8% 62.8% -25.7% -7.9%
Program services revenue 1.6% 0.0% 0.0% 0.0% 0.0%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 2.0% 1.6% 0.3% 1.5% 1.5%
Government grants 0.0% 0.0% 3.9% 5.2% 0.0%
All other grants and contributions 94.5% 97.5% 94.1% 91.8% 98.9%
Other revenue 1.8% 0.8% 1.7% 1.5% -0.4%
Expense composition info
Total expenses before depreciation $4,567,262 $3,012,408 $2,916,791 $2,090,762 $2,528,581
Total expenses, % change over prior year -28.7% -34.0% -3.2% -28.3% 20.9%
Personnel 32.8% 29.5% 39.1% 45.7% 40.4%
Professional fees 13.7% 10.6% 39.3% 24.4% 27.2%
Occupancy 4.2% 6.4% 6.4% 8.6% 7.4%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 25.9% 32.1% 4.4% 6.1% 6.8%
All other expenses 23.3% 21.4% 10.8% 15.2% 18.1%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $4,608,281 $3,058,701 $2,955,289 $2,124,677 $2,559,196
One month of savings $380,605 $251,034 $243,066 $174,230 $210,715
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $0 $51,243
Total full costs (estimated) $4,988,886 $3,309,735 $3,198,355 $2,298,907 $2,821,154

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 2.8 4.9 7.2 15.9 13.9
Months of cash and investments 7.3 8.7 9.4 25.2 20.7
Months of estimated liquid unrestricted net assets -1.1 3.1 10.3 21.3 20.8
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $1,055,155 $1,220,150 $1,755,398 $2,774,248 $2,938,625
Investments $1,704,721 $965,146 $521,450 $1,613,778 $1,420,329
Receivables $94,489 $235,711 $1,797,963 $367,344 $686,175
Gross land, buildings, equipment (LBE) $421,864 $443,816 $473,093 $487,291 $538,534
Accumulated depreciation (as a % of LBE) 75.3% 82.0% 85.1% 89.6% 86.7%
Liabilities (as a % of assets) 42.4% 35.0% 22.2% 4.3% 6.1%
Unrestricted net assets -$316,587 $857,014 $2,564,976 $3,766,727 $4,447,451
Temporarily restricted net assets $2,224,307 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $2,224,307 $1,006,499 $998,091 $1,207,915 $983,729
Total net assets $1,907,720 $1,863,513 $3,563,067 $4,974,642 $5,431,180

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

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

Documents
Form 1023/1024 is not available for this organization

CEO and Executive Director

Brad A. Wong

Brad A. Wong is passionate about serving patients and families with life-threatening rare diseases. As CEO and Executive Director of AAMDSIF, he is responsible for the overall management and direction of the Aplastic Anemia & MDS International Foundation, which is the world’s leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PHN), and related bone marrow failure diseases. Brad has extensive nonprofit leadership experience including serving as President & CEO of the Pulmonary Hypertension Association, Executive Director of the Foundation of the American Academy of Ophthalmology, and Assistant Vice President of the University of California, San Francisco Foundation.

Number of employees

Source: IRS Form 990

Aplastic Anemia and MDS International Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
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Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

Aplastic Anemia and MDS International Foundation

Highest paid employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of highest paid employee data for this organization

Aplastic Anemia and MDS International Foundation

Board of directors
as of 02/14/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Deborah Ziff Cook

Stephanie Dillon Hamm

Austin, TX

Bart Fisher

Washington,DC

Melanie Marquez

Chicago, IL

Judy Paulette

Kansas City, MO

James Gajewksi

Portland, OR

Saira Sufi

Washington, DC

Rebecca Doane

West Palm Beach, FL

Kevin Lyons-Tarr

Neenah, WI

Marlena Connor

Cedar Grove, NJ

Dr. Mary Horowitz

Milwaukee, WI

Peter Miller

Sicklerville, NJ

Hetal Soni

Belle Mead, NJ

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? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 2/14/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

Transgender Identity

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 12/04/2019

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 seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.

Contractors

Fiscal year ending

Professional fundraisers

Fiscal year ending

SOURCE: IRS Form 990 Schedule G

Solicitation activities
Gross receipts from fundraising
Retained by organization
Paid to fundraiser