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Denver CO | IRS ruling year: 1994 | EIN: 13-3753992
The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awarene ... (More)
The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions. (Less)
Great
This charity's score is 92%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
This overall score is calculated from multiple beacon scores: 80% Accountability & Finance, 10% Leadership & Adaptability, 10% Culture & Community. Learn more about our criteria and methodology.
We recognize that not all metrics and beacons equally predict a charity’s success. The percentage each beacon contributes to the organization’s overall rating depends on the number of beacons an organization has earned.
Use the tool below to select different beacons to see how the weighting shifts when only one, two, or three beacons are earned.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
The IRS is significantly delayed in processing nonprofits' annual tax filings (Forms 990). As a result, the Accountability & Finance score for Moebius Syndrome Foundation is outdated and the overall rating may not be representative of its current operations. Please check with the charity directly for any questions you may have.
Moebius Syndrome Foundation has earned a 90% for the Accountability & Finance beacon. See the metrics below for more information.
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
This Accountability & Finance score represents IRS Form 990 data up until FY 2019, which is the most recent Form 990 currently available to us.
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Full Credit
Partial Credit
No Credit
Not ApplicableBoard Composition - 10/10 - 35/35 ptsBoard Composition - 10/10 - 35/35 pts
Charity Navigator looks for at least 3 board members, with more than 50% of those members identified as independent (not salaried).
The presence of an independent governing body is strongly recommended by many industry professionals to allow for full deliberation and diversity of thinking on governance and other organizational matters.
Source: IRS Form 990
Independent Audit or Financial Review - N/A - 0/0 ptsIndependent Audit or Financial Review - N/A - 0/0 pts
An Audit, Review, or Compilation provides important information about financial accountability and accuracy. Organizations are scored based on their Total Revenue Amount:
| Total Revenue Amount | Expectation to Receive Credit |
|---|---|
| $1 million or higher | Expected to complete an audit |
| $500,000 - $1 million | Expected to complete an audit, review, or compilation |
| Less than $500,000 | No expectation (removed from scoring methodology) |
Source: IRS Form 990
Conflict of Interest Policy - Listed - 5/5 ptsConflict of Interest Policy - Listed - 5/5 pts
Charity Navigator looks for the existence of a conflict of interest policy on the Form 990 as an accountability and transparency measure.
This policy protects the organization and by extension those it serves, when it is considering entering into a transaction that may benefit the private interest of an officer, director and/or key employee of the organization.
Source: IRS Form 990
Board Meeting Minutes - Documented - 5/5 ptsBoard Meeting Minutes - Documented - 5/5 pts
Charity Navigator looks to confirm on the Form 990 that the organization has this process in place as an accountability and transparency measure.
An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference.
Source: IRS Form 990
Document Retention and Destruction - Missing - 0/5 ptsDocument Retention and Destruction - Missing - 0/5 pts
Charity Navigator looks for the existence of a document retention and destruction policy per the Form 990 as an accountability and transparency measure.
This policy establishes guidelines for the handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promote data integrity.
Source: IRS Form 990
Whistleblower Policy - Missing - 0/5 ptsWhistleblower Policy - Missing - 0/5 pts
Charity Navigator looks for the existence of a whistleblower policy per the Form 990 as an accountability and transparency measure.
This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report financial or other types of mismanagement.
Source: IRS Form 990
Website - Listed - 5/5 ptsWebsite - Listed - 5/5 pts
Charity Navigator looks for a website on the Form 990 as an accountability and transparency metric.
Nonprofits act in the public trust and reporting publicly on activities is an important component.
Source: IRS Form 990
Full CreditPartial CreditNo CreditNot ApplicableLiabilities to Assets Ratio - 0.02% - 15/15 ptsLiabilities to Assets Ratio - 0.02% - 15/15 pts
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent 990). This ratio is an indicator of an organization’s solvency and/or long-term sustainability.
| Liabilities to Assets Ratio | Amount of Credit Received |
|---|---|
| Less than 50% | Full Credit |
| 50% - 59.9% | Partial Credit |
| 60% or more | No Credit |
Source: IRS Form 990
Program Expense Ratio - 91.84% - 25/25 ptsProgram Expense Ratio - 91.84% - 25/25 pts
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.
| Program Expense Percentage | Amount of Credit Received |
|---|---|
| 70% or higher | Full Credit |
| 60% - 69.9% | Partial Credit |
| 50% - 59.9% | Zero Points for Program Expense Score |
| Below 50% | Zero Points for Both Program Expense AND Liabilities to Assets Scores |
Source: IRS Form 990
This chart displays the trend of revenue and expenses over the past several years for this organization, as reported on their IRS Form 990.
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 do not include nontaxable benefits, deferred compensation, or other amounts not reported on Form W-2. In some cases, these amounts may include compensation from related organizations. Read the IRS policies for compensation reporting
Source: IRS Form 990 (page 7), filing year 2019
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:
Described in section 170(b)1)(a)(vi) of the Code (BMF activity code: 994)
Gifts, grants, or loans to other organizations (BMF activity code: 602)
Fundraising (BMF activity code: 927)
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)
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 search for this organization's Forms 990 on the IRS website (if any are available). Simply enter the organization's name (Moebius Syndrome Foundation) or EIN (133753992) in the 'Search Term' field.
This organization was impacted by COVID-19 in a way that effected their financial health in 2020. This normally would have reduced their star rating. 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, and doing this pauses our revision of their rating. Charities may submit their own pandemic responses through their nonprofit portal.
Moebius Syndrome Foundation reported being impacted by COVID-19 in the following ways:
Program Delivery
Grants Received
How COVID-19 impacted the organization's operations financially:
During Covid-19, many grants became unavailable as businesses and other organizations stopped funding temporarily.
How COVID-19 impacted the organization's delivery of programs:
Because of the uncertainty of the pandemic, we had to cancel two consecutive in-person national conferences, as well as several regional events.
How this organization adapted to changing conditions caused by COVID-19:
We adapted by creating two years of virtual conferences and events.
Innovations the organization intends to continue permanently after the pandemic:
We will continue to create free webinars and virtual social events to keep our community connected throughout the year.
Not Currently Scored
Moebius Syndrome Foundation cannot currently be evaluated by our 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.
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Moebius Syndrome Foundation reported its three largest programs on its FY 2019 Form 990 as:
Spent in most recent FY
Percent of program expenses
PROVIDE INFORMATION AND SUPPORT TO INDIVIDUALS WITH MOEBIUS SYNDROME AND THEIR FAMILIES. THE NEWSLETTER AND BIANNUAL CONFERENCE ARE THE PRIMARY MEANS OF ACCOMPLISHING THIS GOAL.
Spent in most recent FY
Percent of program expenses
PROMOTE GREATER AWARENESS AND UNDERSTANDING OF MOEBIUS SYNDROME. THE NEWSLETTER AND BIANNUAL CONFERENCE ARE THE PRIMARY MEANS OF ACCOMPLISHING THIS GOAL.
Spent in most recent FY
Percent of program expenses
ADVOCATE FOR SCIENTIFIC RESEARCH TO ADVANCE THE DIAGNOSIS AND TREATMENT OF MOEBIUS SYNDROME AND ITS ASSOCIATED CONDITIONS.
Moebius Syndrome Foundation has earned a 100% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
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Full CreditPartial CreditNo CreditNot ApplicableConstituent Feedback - Data Available - 100/100 ptsConstituent Feedback - Data Available - 100/100 pts
30% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. 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.
Who are the people you serve with your mission? Describe briefly.
Individuals and families impacted by Moebius syndrome.
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), Paper surveys, Suggestion box/email
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 identify where we are less inclusive or equitable across demographic groups, 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
How has asking for feedback from the people you serve changed your relationship with them or shifted power - over decisions, resources, rules or in other ways - to them?
We are a member-driven association and solicit and incorporate member feedback whenever possible. We have a 12 member board of directors including individuals with Mo, parents, and a physician, as well as a 16-member Scientific Advisory Board which specializes in many aspects of Moebius syndrome and its associated conditions comprised of physicians, clinicians, and therapists. The Foundation hosts a biennial Research Symposium that connects researchers with the MS community. The feedback collected at these events directly impacts research funded. We also maintain a database of >4,000 individuals interested in or directly impacted by MS. We host “The Home For The Moebius Syndrome Community” Facebook Page, with >800 members.
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
The patient voice has always been central to our research efforts. We have a 16-member Scientific Advisory Board which specializes in various aspects of Moebius syndrome and its associated conditions (physicians, clinicians, and therapists). The Foundation hosts a biennial Research Symposium that connects physicians/clinicians and researchers with the Moebius community. We maintain a database of more than 4,000 individuals interested in or directly impacted by Moebius syndrome. Additionally, we host “The Home For The Moebius Syndrome” Community Facebook Page, with more than 800 members. We have conducted polls using all of these platforms and are responsive to community-raised questions in these forums.
Equity Practices - Data Available - 100/100 ptsEquity Practices - Data Available - 100/100 pts
70% of beacon score
This organization's score of 100 is a passing score. The organization reported that it is implementing 11 Equity Practices. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Equity Practices (6/7) | |
|---|---|
We review compensation data across the organization (and by staff levels) to identify disparities by race. | |
We ask team members to identify racial disparities in their programs and/or portfolios. | |
We analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support. | |
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders. | |
We disaggregate data by demographics, including race, in every policy and program measured | |
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization. | |
Equity Policies and Procedures (5/7) | |
|---|---|
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
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. | |
We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability. | |
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
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. | |
Moebius Syndrome Foundation has earned a 100% for the Leadership & Adaptability beacon. See the metrics below for more information.
This beacon 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.
Learn more
Full CreditPartial CreditNo CreditNot ApplicableMission - 10/10 ptsMission - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
THE MISSION OF THE MOEBIUS SYNDROME FOUNDATION IS TO PROVIDE INFORMATION AND SUPPORT TO INDIVIDUALS WITH MOEBIUS SYNDROME AND THEIR FAMILIES, PROMOTE GREATER AWARENESS AND UNDERSTANDING OF MOEBIUS SYNDROME, AND TO ADVOCATE FOR SCIENTIFIC RESEARCH TO ADVANCE THE DIAGNOSIS AND TREATMENT OF MOEBIUS SYNDROME AND ITS ASSOCIATED CONDITIONS.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
The vision of the Moebius Syndrome Foundation is to create a kinder, more inclusive culture for those with any type of facial difference or disability of any kind. We seek to educate the general public about greater equality for those with any type of difference, and also to teach others, including healthcare professionals, about Moebius syndrome. We also seek to continue investing in worthy research that will help to give answers about the cause and treatments of Moebius syndrome and its related conditions and continue to provide innovative and supportive events for our members.
Source: Nonprofit submitted responses
Goals - 20/20 ptsGoals - 20/20 pts
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: Membership Outreach and Support: Events (including national conferences); mentorship programming, developing a new and more informative website.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: Education: Creating new educational literature for schools, and physicians, as well as developing some of our current resources into Spanish.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Three: Research: Continue to identify research that is crucial to the health of our members, and provide grant opportunities to qualified applicants.
Goal Type: Invest in the capacity of our organization (financial, management, technical, etc.).
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
We have recently completed an in-person development session with our entire Board of Directors. The focus was on further narrowing down our vision, and goals, and making sure they still fell into alignment with our mission. The Executive Director is also currently enrolled in a non-profit leadership course.
Mobilizing for Mission - 15/15 ptsMobilizing for Mission - 15/15 pts
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Thought Leadership
Raising Awareness
Community Building
The Moebius Syndrome Foundation has many valuable partnerships with other organizations that support the rare disease and craniofacial differences communities. Included are myFace, NORD, Children's Craniofacial Association, Global Genes, Face Equality International, and others. The Moebius Syndrome Foundation seeks opportunities to attend our partner organization's event in order to share information about Moebius syndrome and to learn how to better support our members. We also fund grant opportunities to help further the cause of Moebius syndrome and its related conditions and publish the results of the finding to our community. The Moebius Syndrome Foundation has very active social media platforms which are used to promote awareness about Moebius syndrome, upcoming events, educational publishing, and to celebrate our members.
Adaptability Story - 30/30 ptsAdaptability Story - 30/30 pts
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
In the past year, the Moebius Syndrome Foundation has embraced the challenges caused by the Covid-19 pandemic and pivoted by increasing our virtual events and educational webinars. We've also been sensitive to increasing our diversity on our Board of Directors and have more actively sought to identify any diversity needs and healthcare disparity within the Moebius community.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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