Mission:

The Aplastic Anemia and MDS Foundation International is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic an ... (More)

Aplastic Anemia & MDS International Foundation is a 501(c)(3) organization, with an IRS ruling year of 1984, and donations are tax-deductible.  Cause: Diseases, Disorders, and Disciplines


Contact Information

  http://www.aamds.org

 4330 East West Highway
Suite 230
Bethesda MD 20814 

  800-747-2820


You are viewing this organization's new Charity Navigator profile page. To view the legacy version, click here.

Star Rating System


Charity Navigator evaluates a nonprofit organization’s financial health including measures of stability, efficiency and sustainability. We also track accountability and transparency policies to ensure the good governance and integrity of the organization.




Good

This charity's score is 84.09, earning it a 3-Star rating. Donors can "Give with Confidence" to this charity. 

This score is calculated from two sub-scores:

This score represents Form 990 data from 2019, the latest year published by the IRS.

View this organization's historical ratings on our legacy website.


Back to Top

Star Rated Report

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Program Expense

Program Expense Ratio

85.4%


The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three 990s).


This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver. Dividing a charity's average program expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Administrative Expenses

5.2%


As reported by charities on their IRS Form 990, this measure reflects what percent of its total budget a charity spends on overhead, administrative staff and associated costs, and organizational meetings. Dividing a charity's average administrative expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Fundraising Expenses

9.3%


This measure reflects what a charity spends to raise money. Fundraising expenses can include campaign printing, publicity, mailing, and staffing and costs incurred in soliciting donations, memberships, and grants. Dividing a charity's average fundraising expenses by its average total functional expenses yields this percentage. We calculate the charity's average expenses over its three most recent fiscal years.


Source: IRS Form 990

Liabilities to Assets Ratio

35.0%


The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990).


Part of our goal in rating the financial performance of charities is to help donors assess the financial capacity and sustainability of a charity. As do organizations in other sectors, charities must be mindful of their management of total liabilites in relation to their total assets. This ratio is an indicator of an organization’s solvency and or long term sustainability. Dividing a charity's total liabilities by its total assets yields this percentage.


Source: IRS Form 990

Fundraising Efficiency

$0.11


The amount spent to raise $1 in charitable contributions. To calculate a charity's fundraising efficiency, we divide its average fundraising expenses by the average total contributions it receives. We calculate the charity's average expenses and average contributions over its three most recent fiscal years.


Source: IRS Form 990

Working Capital Ratio

0.39 years


Determines how long a charity could sustain its level of spending using its net available assets, or working capital, as reported on its most recently filed Form 990. We include in a charity's working capital unrestricted and temporarily restricted net assets, and exclude permanently restricted net assets. Dividing these net available assets in the most recent year by a charity's average total expenses, yields the working capital ratio. We calculate the charity's average total expenses over its three most recent fiscal years.


Source: IRS Form 990

Program Expense Growth

-25.96%


We compute the average annual growth of program expenses using the following formula: [(Yn/Y0)(1/n)]-1, where Y0 is a charity's program expenses in the first year of the interval analyzed, Yn is the charity's program expenses in the most recent year, and n is the interval of years passed between Y0 and Yn.


Source: IRS Form 990

Governance


Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.


Sources Include: IRS Form 990

Governance:
Independent Voting Board Members
No Material Diversion of Assets
Audited Financials Prepared by Independent Accountant
Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties
Documents Board Meeting Minutes
Distributes 990 to Board Before Filing
Compensates Board

Policies


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization has these policies in place.


Sources Include: IRS Form 990 and organization's website

Policies:
Conflict of Interest
Whistleblower
Records Retention and Destruction
CEO Compensation Process
Donor Privacy

Transparency


Charity Navigator looks to confirm on the Form 990, or for some metrics on the charity's website, that the organization makes this information easily accessible.


Sources Include: IRS Form 990 and organization's website

Transparency:
CEO Salary Listed on 990
Board of Directors Listed on Website
Key Staff Listed on Website
Audited Financial Statements on Website
Form 990 Available on Website

Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Total Revenue and Expenses

Total Revenue and Expenses

This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.

Salary of Key Persons

Presented here are up to five of this organization's highest compensated employees. This compensation data includes salary, cash bonuses, and expense accounts and is displayed exactly how it is reported to the IRS. The amounts include salary, cash bonuses, and expense accounts. The amounts do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. Read the IRS policies for compensation reporting



JULIE POWERS, SENIOR DIRECTOR, PATIENT ADVOCACY

$108,146


ALICE HOUK, SENIOR DIRECTOR, HEALTH PROFESSIONAL PROGRAMS

$103,417


NEIL HORIKOSHI, CEO

$98,844


KEVIN LYONS-TARR, CHAIR

$0


HARSHA MURTHY, VICE CHAIR

$0


Source: IRS Form 990 (page 7), filing year 2019

Business Master File Data

Below are some key data points from the Exempt Organization IRS Business Master File (BMF) for this organization. Learn more about the BMF on the IRS website


Activities:

Scientific research (diseases) (BMF activity code: 161)

Gifts, grants, or loans to other organizations (BMF activity code: 602)


Foundation Status:

Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi) (BMF foundation code: 15)


Affiliation:

Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations). (BMF affiliation code: 3)

Data Sources: IRS Forms 990

The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage finance and accountability data from it to form Encompass ratings. Click here to view this organization's Forms 990 on the IRS website (if any are available).

Pandemic Response

This organization was impacted by the COVID-19 pandemic in a way that affected their financial health. Due to the unprecedented nature of the pandemic, we give charities such as this one the opportunity to share the story of COVID's impact on them. Charities may submit their own pandemic responses through their nonprofit portal.


Aplastic Anemia & MDS International Foundation reported being impacted by COVID-19 in the following ways:
  • Program Delivery

  • Fundraising Capacity


How COVID-19 impacted the organization's operations financially:

AAMDSIF was affected by a significant reduction in our in-person and event fundraising efforts which reduced our unrestricted funding. We were able to secure additional financial support from foundations and corporate partners tied to delivering programs and services related to the pandemic which was very important to ensuring that our organization continued to function effectively and with minimal financial disruptions.


How COVID-19 impacted the organization's delivery of programs:

AAMDSIF, like most nonprofit organizations, pivoted to delivering programs and services exclusively in the virtual space including transitioning our in-person conferences and continuing education programs to online platforms. Interestingly, in 2020, the Foundation served significantly more patients, families, caregivers and healthcare providers than in any previous year and we increased our virtual community offerings to include support groups, conferences, print/digital publications, online learning modules, interviews and more.


How this organization adapted to changing conditions caused by COVID-19:

AAMDSIF pivoted to working exclusively remotely at the beginning of the pandemic. As the global leader in support patients, families, caregivers and healthcare providers dealing with bone marrow failure diseases, it was (and remains) critically important that we model best practices to ensure the safety of our patients. A few staff members went into the office regularly, however most staff have not returned to the office since early March 2020.


Innovations the organization intends to continue permanently after the pandemic:

We are delighted with the success of our virtual Patient & Family Conferences, our webinars and our support groups. We plan to continue these programs into the future and will not be going back to exclusively in-person learning events ever again.


...   Impact & Results


This score estimates the actual impact a nonprofit has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.


Impact & Results Score

Not Currently Scored

Aplastic Anemia & MDS International Foundation cannot currently be evaluated by our Encompass Rating Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.

Note: The absence of a score does not indicate a positive or negative assessment, it only indicates that we have not yet evaluated the organization.

Learn more about Impact & Results.

Do you work at Aplastic Anemia & MDS International Foundation? Join the waitlist for an updated Impact & Results score.


Back to Top

Additional Information

Unscored

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Largest Programs

Largest Programs



Aplastic Anemia & MDS International Foundation reported its largest program on its FY 2019 Form 990 as:


$2,503,880

Spent in most recent FY

100%

Percent of program expenses


PROVIDED PATIENT EDUCATION MATERIALS AND PROGRAMS REGARDING DIAGNOSIS, TREATMENT AND LIVING WITH BONE MARROW FAILURE DISEASES; PROVIDED PEER SUPPORT THROUGH A NETWORK OF VOLUNTEERS; BUILD AWARENESS AN ... (More)


...   Leadership & Adaptability


This score provides an assessment of the organization's leadership capacity, strategic thinking and planning, and ability to innovate or respond to changes in constituent demand/need or other relevant social and economic conditions to achieve the organization's mission.


Leadership & Adaptability Score

100

out of 100

The score earned by Aplastic Anemia & MDS International Foundation is a passing score.

Encompass Rating V4 provides an evaluation of the organization's Leadership & Adaptability through the nonprofit organization submitting a survey response directly to Charity Navigator.


Back to Top

Leadership & Adaptability Report

100

of 100 points

Mission

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s mission


The Aplastic Anemia and MDS Foundation International 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.


Source: Nonprofit submitted responses

Vision

The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.


We envision the day when bone marrow failure not longer exists because the diseases are universally curable. Until then, will continue to strive to evolve our programs and services to meet the needs of the patients, families, caregivers and healthcare providers who turn to us as trusted partners and sector leaders. Our interim vision is to invest in research and awareness campaigns to ensure that patients get accurately diagnosed and can access curative or supportive treatments in their communities.


Source: Nonprofit submitted responses

Strategic Goals

The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.


Goal One: Optimize AAMDSIF's impact of patient health by stratifying patient engagement, aligning our educational programs for empowerment and adopting an integrative learning approach.

Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.


Goal Two: Deepen and expand our engagement with healthcare providers to engage qualified hematologists/oncologists in continuing education, patient referrals and investment in education/awareness.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Goal Three: Increase AAMDSIF's investment in research toward curative treatments for bone marrow failure including launching patient registries, partnering with other advocacy groups and identifying new donors.

Goal Type: Grow, expand, scale or increase access to the existing programs and services.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

AAMDSIF has invested in both staff and volunteer leadership. Staff has been encouraged and supported to advance their learning either through formalized coursework or informal mentoring relationships, and attending continuing education sessions. AAMDSIF has also engaged outside consultants to provide leadership development training for volunteer board members around governance, financial responsibility, diversity, equity and inclusion.

Source: Nonprofit submitted responses

Mobilizing for Mission

The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.


This organization mobilizes for mission in the following ways:
  • Strategic Partnerships

  • Networks of Collective Impact Efforts

  • Thought Leadership

  • Raising Awareness

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

AAMDSIF is a global leader in rare disease advocacy and education. We partner with other organizations across the globe to raise awareness of our diseases, the importance of accurate diagnosis and the patient journey. We work within the U.S. with several consortia to advance policies and practices critical to our constituents and we present at conferences, symposia and other events about our efforts in all areas of our work.

Source: Nonprofit submitted responses

Story of Adaptability

The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.


AAMDSIF was found 37 years ago and grew rapidly from our early days in a tiny office in rural Maryland to the global leader in bone marrow failure disease. When we were first founded, there was no real treatment for aplastic anemia and a diagnosis was a death sentence. Today, most aplastic anemia patients live normal, healthy lives after choosing the chemotherapy or transplant route. 37 years ago, PNH patients rarely lived more than a decade post diagnosis, today, patients have several treatment options and more are in clinical trials. The WHO didn't even have a name for MDS (myelodysplastic syndromes) until the 1980s and until the 200s, it was usually called pre-leukemia and almost always turned into AML. Patients today get a complex diagnosis and treatment plan based on their specific type of MDS using a comprehensive diagnostic tool that AAMDSIF helped develop. While the only curative treatment is a transplant, many MDS patients live full and healthy lives with one of the many treatment options that are best for their specific mutation. AAMDSIF doesn't just adapt to external change, we have been at the nexus of change in the rare disease space. We were the first rare disease advocacy organization to go out on the road for patient conferences held in conjunction with continuing education opportunities for healthcare providers. We pioneered what's now called Be the Match (the National Bone Marrow Donor Registry) and today we continue to adapt through the pandemic. As most of our patients are either unable to get vaccinated or are having incomplete responses to the COVID-19 vaccines, the pandemic will continue for our community for years to come. Change is inevitable and we look forward to the next challenges.

Source: Nonprofit submitted responses

...   Culture & Community


This score provides an assessment of the organization's engagement with the constituents it serves, a practice we term Constituent Feedback. When organizations listen to constituents, they are able to better deliver on programs and meet the needs of stakeholders. A future version of this Beacon will also assess an organization's people operations and its Diversity, Equity and Inclusion (DEI) metrics.


Culture & Community Score

100

out of 100

The score earned by Aplastic Anemia & MDS International Foundation is a passing score.

Encompass Rating V4 provides an evaluation of an organization's Culture and Community by measuring its Constituent Feedback practices (see report below). Constituent Feedback data provides 100% of the basis for the initial evaluation of the Culture & Community Beacon.


Back to Top

Culture & Community Report

100

of 100 points

This beta feature is currently viewable only on desktop or tablet screens. Check back later for updates.

Constituent Feedback

Constituent Feedback

Full Credit


Here's how this organization is listening and learning from the people they serve:


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


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


With whom does your organization share the feedback you got from the people you serve?

The people we serve, Our staff, Our board, Our funders, Our community partners


What challenges does your organization face in collecting feedback from the people you serve?

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


Briefly describe a recent change that your organization made in response to feedback from the people you serve.

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.



Methodology


Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective. We've partnered with GuideStar by Candid to survey organizations about their feedback practices. Nonprofit organizations can fill out the How We Listen section of their Candid profile to receive a rating.


Charity Navigator awards full credit for this Beacon to every nonprofit that is eligible for an Encompass Rating that completes the survey, in recognition of their willingness to publicly share this information with the nonprofit and philanthropic communities. This data is not evaluated for quality at this time. Validation will be added in future iterations of this Beacon.

Analysis and Research


Like the overall Encompass Rating System, the Culture & Community Beacon is designed to evolve as metrics are developed and ready for integration. Our partnership with Feedback Labs and Guidestar by Candid, and other partners including Fund for Shared Insight, GlobalGiving, and Keystone Accountability, enables us to launch the first version of this beacon with Constituent Feedback information collected on Candid's site.


Feedback practices have been shown to support better Diversity, Equity, and Inclusion outcomes, an essential area of assessment that we intend to further expand and develop in the future. Feedback Labs has documented several studies which indicate that beyond achieving organizational goals, nonprofits that are attentive and responsive to concerns and ideas raised by beneficiaries establish stronger relationships with the people they serve, promote greater equity, and empower constituents in ways that can help to ensure better long-term outcomes. You can find resources to help nonprofits improve their feedback practices here.