Aplastic Anemia and MDS International Foundation
Answers, Support and Hope
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
1984
CEO and Executive Director
Brad A. Wong
Main address
4330 East West Highway Suite 230
Bethesda, MD 20814 USA
Formerly known as
Aplastic Anemia Foundation of America
EIN
52-1336903
Diseases and conditions
Population served
Adults
Caregivers
People with diseases and illnesses
Academics
NTEE code
Specifically Named Diseases (G80)
Alliance/Advocacy Organizations (G01)
Specifically Named Diseases Research (H80)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Affiliations
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
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
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.
Health Professional Programs
AAMDSIF offers accredited educational programs to provide the latest information on the diagnosis, genetic characteristics, pathology and management of bone marrow failure diseases.
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.
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
Learn more about Sustainable Development Goals.
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?
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.
What are the organization's key strategies for making this happen?
>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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
* 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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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Who are the people you serve with your mission?
Patients, families and caregivers living with bone marrow failure diseases as well as the healthcare professionals who provide care in hematology/oncology and related fields. Bone marrow failure diseases affect everyone, from children to elders. Some conditions, like aplastic anemia, disproportionately affect people of Asian and African descent at higher rates than people of Caucasian ancestry. Some conditions, like Myelodysplastic Syndromes, are overwhelmingly diseases of elders, affecting primarily people over the age of 70.
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How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Constituent (client or resident, etc.) advisory committees,
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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,
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What significant change resulted from feedback?
We solicited feedback from a number of constituent stakeholder groups about our patient-focused programs and services and used the recommendations to adjust our educational offerings for the current and future program years.
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
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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,
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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, It is difficult to find the ongoing funding to support feedback collection, It is difficult to identify actionable feedback,
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2020 info
2.23
Months of cash in 2020 info
7.2
Fringe rate in 2020 info
18%
Funding sources info
Assets & liabilities info
Aplastic Anemia and MDS International Foundation
Revenue & expensesFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
Aplastic Anemia and MDS International Foundation
Balance sheetFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
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.
Aplastic Anemia and MDS International Foundation
Financial trends analysis Glossary & formula definitionsFiscal Year: Jan 01 - Dec 31
SOURCE: IRS Form 990
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 | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $96,673 | -$464,777 | -$226,238 | $1,219,894 | $1,746,460 |
| As % of expenses | 1.4% | -7.3% | -5.0% | 40.5% | 59.9% |
| Unrestricted surplus (deficit) after depreciation | $51,317 | -$503,379 | -$267,257 | $1,173,601 | $1,707,962 |
| As % of expenses | 0.8% | -7.8% | -5.8% | 38.4% | 57.8% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $6,398,141 | $5,420,085 | $3,056,482 | $2,879,436 | $4,687,320 |
| Total revenue, % change over prior year | 15.2% | -15.3% | -43.6% | -5.8% | 62.8% |
| Program services revenue | 1.0% | 0.6% | 1.6% | 0.0% | 0.0% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 1.3% | 1.1% | 2.0% | 1.6% | 0.3% |
| Government grants | 0.2% | 0.0% | 0.0% | 0.0% | 3.9% |
| All other grants and contributions | 97.8% | 97.4% | 94.5% | 97.5% | 94.1% |
| Other revenue | -0.2% | 0.9% | 1.8% | 0.8% | 1.7% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $6,733,881 | $6,410,017 | $4,567,262 | $3,012,408 | $2,916,791 |
| Total expenses, % change over prior year | 2.6% | -4.8% | -28.7% | -34.0% | -3.2% |
| Personnel | 26.0% | 29.7% | 32.8% | 29.5% | 39.1% |
| Professional fees | 11.2% | 11.8% | 13.7% | 10.6% | 39.3% |
| Occupancy | 3.2% | 2.9% | 4.2% | 6.4% | 6.4% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 41.6% | 38.5% | 25.9% | 32.1% | 4.4% |
| All other expenses | 18.0% | 17.1% | 23.3% | 21.4% | 10.8% |
| Full cost components (estimated) info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $6,779,237 | $6,448,619 | $4,608,281 | $3,058,701 | $2,955,289 |
| One month of savings | $561,157 | $534,168 | $380,605 | $251,034 | $243,066 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $130,695 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $7,471,089 | $6,982,787 | $4,988,886 | $3,309,735 | $3,198,355 |
Capital structure indicators
| Liquidity info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Months of cash | 2.8 | 1.6 | 2.8 | 4.9 | 7.2 |
| Months of cash and investments | 7.6 | 8.0 | 7.3 | 8.7 | 9.4 |
| Months of estimated liquid unrestricted net assets | 0.6 | -0.3 | -1.1 | 3.1 | 10.3 |
| Balance sheet composition info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Cash | $1,581,413 | $829,228 | $1,055,155 | $1,220,150 | $1,755,398 |
| Investments | $2,680,166 | $3,438,609 | $1,704,721 | $965,146 | $521,450 |
| Receivables | $652,890 | $1,146,623 | $94,489 | $235,711 | $1,797,963 |
| Gross land, buildings, equipment (LBE) | $360,519 | $386,951 | $421,864 | $443,816 | $473,093 |
| Accumulated depreciation (as a % of LBE) | 66.0% | 71.5% | 75.3% | 82.0% | 85.1% |
| Liabilities (as a % of assets) | 20.5% | 39.4% | 42.4% | 35.0% | 22.2% |
| Unrestricted net assets | $454,049 | -$49,330 | -$316,587 | $857,014 | $2,564,976 |
| Temporarily restricted net assets | $4,028,801 | $3,628,291 | $2,224,307 | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | $0 | N/A | N/A |
| Total restricted net assets | $4,028,801 | $3,628,291 | $2,224,307 | $1,006,499 | $998,091 |
| Total net assets | $4,482,850 | $3,578,961 | $1,907,720 | $1,863,513 | $3,563,067 |
Key data checks
| Key data checks info | 2016 | 2017 | 2018 | 2019 | 2020 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
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 employeesSOURCE: IRS Form 990
Compensation data
Aplastic Anemia and MDS International Foundation
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Aplastic Anemia and MDS International Foundation
Board of directorsas of 02/14/2023
Board of directors data
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
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? 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
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
No data
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 12/04/2019GuideStar 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 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 endingProfessional fundraisers
Fiscal year endingSOURCE: IRS Form 990 Schedule G
Solicitation activities
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- Financial statements for 2021, 2020, 2019, 2018, 2017
- Letter of Determination
- Officer and/or Employee data for 2020, 2019, 2018, 2017, 2016
- Contractor and/or Paid Preparer data for 2020, 2019, 2018
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