Mission: TO IMPROVE THE QUALITY OF LIFE AND SURVIVAL TIMES FOR BRAIN TUMOR PATIENTS BY USING COMPUTER TECHNLOGY TO STREAMLINE THE FLOW OF INFORMATION, ORGANIZE THE BRAIN TUMO ... (More)

Musella Foundation for Brain Tumor Research & Information Inc. is a 501(c)(3) organization, with an IRS ruling year of 1998, and donations are tax-deductible.

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Contact Information

  virtualtrials.org

  1100 PENINSULA BLVD
Hewlett NY 11557-1125



...  ...  ...  ...  

Encompass Rating System by Charity Navigator


Overall Score

97

out of 100

This charity's score is a passing score.
This overall score is calculated from multiple beacon scores: 33% Finance & Accountability, 57% Impact & Results, and 10% Leadership & Adaptability


Learn about the Encompass Rating System: Overview | FAQ | Release Notes

Next: Impact & Results

...   Finance & Accountability


This score provides an assessment of a nonprofit's financial health (stability, efficiency and sustainability) and its commitment to governance practices and policies.


Finance & Accountability Score

91

out of 100

The score earned by Musella Foundation for Brain Tumor Research & Information Inc. is a passing score

This V6 of the Finance & Accountability Score provides a baseline measure of an organization's health including the indicators listed in the report below.

This score represents Form 990 data from 2020, the latest year electronically filed and published by the IRS.



Back to Overall

Finance & Accountability Report

91

of 100 points

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Program Expense

Program Expense Ratio

94.57%

Higher effect on score

More data  


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 higherFull 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

Board Composition

18/19 Independent

Higher effect on score


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

Audited

Higher effect on score


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 higherExpected to complete an audit
$500,000 - $1 millionExpected to complete an audit, review, or compilation
Less than $500,000No expectation (removed from scoring methodology)

Source: IRS Form 990

Liabilities to Assets Ratio

0.88%

Lower effect on score


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 moreNo Credit

Source: IRS Form 990

Website

Listed

Lower effect on score


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

Conflict of Interest Policy

Missing

Lower effect on score


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

Lower effect on score


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

Lower effect on score


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

Lower effect on score


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

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

No Data Available


Key Persons data is currently unavailable for this organization. This data is only available if this charity has at least one year of electronically-filed Form 990 data filed within the last six years.

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)


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

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.


Musella Foundation for Brain Tumor Research & Information Inc. reported being impacted by COVID-19 in the following ways:
  • Revenue


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

Income down by about 25% from previous year, and all of our live fundraisers went virtual with out much success


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

We were able to maintain all of our programs at about the same level as prior year


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

We changed our live educational events to virtual and actually did much better. A typical conference in prior years had about 250 attendees. Some of our virtual conferences were seen by 3,000 people. So we will probably give up live educational events and stay with the virtual events.


Innovations the organization intends to continue permanently after the pandemic:

As mentioned, virtual educational events!


Previous: Finance & Accountability  / Next: Leadership & Adaptability

...   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

100

out of 100

Musella Foundation for Brain Tumor Research & Information Inc. is highly cost-effective, earning a passing score.


Impact

$5,800 provides $5,400 in financial assistance to a patient.


Do you work at Musella Foundation for Brain Tumor Research & Information Inc.? Join the waitlist for an updated Impact & Results score.


Back to Overall

Impact & Results Report

100

of 100 points


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

Rated Program

Rated Program


Program

Activities

The nonprofit provides financial assistance to patients with medical conditions.

Program Type

Financial Assistance for Patients with Medical Conditions

Beneficiaries Served

Program Geography

Time Period of Data

1/8/21 to 1/8/22


Learn how we assess the impact of nonprofits

Outcomes and Cost

Outcomes: Changes in the lives of those served by a nonprofit. They can be caused by the nonprofit.

Costs: The money spent by a nonprofit and its partners and beneficiaries.

Impact: Outcome caused by a nonprofit relative to its cost.

Cost-effectiveness: A judgment as to whether the cost was a good use of resources to cause the outcome.


Outcome Metric

Increase in income for a patient with medical conditions


Outcome Data Source

Ratings are based on data the nonprofit itself collects on its work. We use the most recent year with sufficient data. Typically, this data allows us to calculate direct changes in participants' lives, such as increased income.


Outcome data collected during the program. The nonprofit submitted data on the dollar value of all financial assistance provided to patients, which we use to calculate the additional income received.


Method for Attributing Outcomes

We don't know if the observed changes were caused by the nonprofit's program or something else happening at the same time (e.g., a participant got a raise). To determine causation, we take the outcomes we observe and subtract an estimate of the outcomes that would have happened even without the program (i.e., counterfactual outcomes).


We estimate the dollar amount of financial assistance attributable to the nonprofit by comparing the financial assistance given by the nonprofit to the financial assistance that would have been provided in the absence of the nonprofit (the “counterfactual”). In this case, we estimate the counterfactual to be zero based on two assumptions. First, we assume there is functionally no upper limit to the amount of cash transfers that continue to be valuable to patients as they are far from reaching the point of diminishing marginal returns, such that aid provided by one nonprofit does not displace aid provided by another. Second, we assume that nonprofits work independently and do not coordinate the provision of aid to the same patient. As a result, all aid provided by the nonprofit to patients with medical conditions can be directly attributable to the nonprofit.


Cost Data Source

After estimating the program's outcomes, we need to determine how much it cost to achieve those outcomes. All monetary costs are counted, whether they are borne by a nonprofit service deliverer or by the nonprofit’s public and private partners.


Program cost data reported by the nonprofit. Partner and beneficiary costs reported by the nonprofit or estimated by Charity Navigator.


Cost Calculation

$1,695,400 program costs + $0 partner costs + $0 beneficiary costs = $1,695,400 total costs


Impact and Determination

We calculate impact, defined as the change in outcomes attributable to a program divided by the cost to achieve those outcomes.

Impact Calculation

$1,695,400 total costs / $1,555,000 of financial assistance provided = roughly $5,800 provides $5,400 in financial assistance to a patient.

Benchmark for Rating

Impact & Results scores of financial assistance to patients programs are based on income generated relative to cost. Programs receive an Impact & Results score of 100 if they increase income for a recipient by more than $1.50 for every $1 spent and a score of 75 if income increases by more than $0.85 for every $1 spent. If a nonprofit reports impact but doesn't meet the benchmark for cost-effectiveness, it earns a score of 50.

Determination

Highly cost-effective

Analysis Details


Analysis conducted in 2022 by Charity Navigator using data submitted by the nonprofit, theory and evidence from scientific research studies, and public datasets.

Additional Information

Unscored

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Largest Programs

Largest Programs



Musella Foundation for Brain Tumor Research & Information Inc. reported its two largest programs on its FY 2020 Form 990 as:


$813,605

Spent in most recent FY

60%

Percent of program expenses


THE ORGANIZATION RAISED MONEY AND AWARDED GRANTS FOR BRAIN TUMOR RESERACH. THEY SEEK OUT THE MOST INNOVATIVE AND IMPORTANT PROJECTS TO FUND AND SOME OF THE PROJECTS HAVE ALREADY MADE AN IMPACT FOR THI ... (More)


$527,815

Spent in most recent FY

39%

Percent of program expenses


THE ORGANIZATION RUNS A COPAYMENT ASSISTANCE PROGRAM FOR MALIGNANT BRAIN TUMOR PATIENTS WHO HAVE INSURANCE, MEET CERTAIN ELIGIBILITY REQUIREMENTS, AND NEED HELP PAYING FOR TREATMENTS. THE ORGANIZATION ... (More)


Previous: Impact & Results  / Next: Culture & Community

...   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 Musella Foundation for Brain Tumor Research & Information Inc. 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 Overall

Leadership & Adaptability Report

100

of 100 points

Mission

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


The Musella Foundation For Brain Tumor Research & Information, Inc, a 501(c)3 nonprofit public charity dedicated to helping brain tumor patients through emotional and financial support, education, advocacy and raising money for brain tumor research.


Source: Nonprofit submitted responses

Vision

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


Speed up the search for the cure of brain cancer. Specifically aim to double average life expectency within 5 years. We will do this by using our new artificil intelligence system along with our team of brain tumor experts to find the best treatment options for patients, and record the outcomes in our regulatory grade registry.This allows us to learn from every patient, speeding up the learning process.


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: 1. Speed up the search for the cure. This involves learing from every patient and our team of experts with the use of Artificial Intelligence to make sense of all of the choices available

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


Goal Two: 2. Help patients get access to the treatments they need. We do this with our assistance program. We have given out over $8 million in grants to patients so far.

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


Goal Three: 3. Speed up development of new drugs, and increase the amount of research done. Specifically we will advocate for changes to the FDA regualations to speed up approvals and require increased research.

Goal Type: New program(s) based on observed changes in needs among our constituencies/communities served.


Source: Nonprofit submitted responses

Leadership Development

The nonprofit provides evidence of investment in leadership development


Describe an investment in leadership

1. We have joined a collaboration of about 35 nonprofits where the leadership gets together regularly to mentor each other on everything from basic how to run an organization, how to effectively utilize our boards, how to work with other nonprofits and how to analyze grant requests, how to actually process grant requests, working together to handle larger grants than we could by ourselves. 2. Our president has taken online courses in the last 12 months to be a more effective leader. These course were: 1. National Institute of health course on research and ethics. 2. Sexual harrasment and diversity training 3. How to avoid phishing schemes

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

  • Community Building

  • Policy Advocacy

What are this organization’s external mobilizaton efforts?

We take part in many collaborations: DIPG All-In-Initiative, DIPG / DMG Collaborative, Grey Ribbon Crusade, Childrens' Brain Tumor Network. These collaborations do many things such as fund research together, mentor each other, advocate for common causes, fundraiser together. A special project we have now is to advocate for a bill that our organization helped write which is one of the most important bills to speed up cancer cures. All of our collaborators support it. We work on social media to build the community of patients to help support the bill. This bill is for a federal regulation change affecting the FDA. Our president has published 2 articles in scientific journals in the last 24 months and has recently submitted another one. They are: "Barriers To Accrual And Enrollment In Brain Tumor Trials" – Neuro Oncol. 2019 Jun 7 and "A Multilevel Model For Precision Oncology" (Prob Prog 2020)

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.


Our biggest challenge was education events. We used to have live events where we would invite speakers from around the world to talk about their work to an audience of brain cancer patients and their families. Because these were expensive to produce (we never charged patients for attendence), we tended to cram a lot of talks into each event which was sometimes overwhelming. With the advent of Covid-19 all live events were cancelled. We changed to online meetings using a combination of Zoom and Facebook. This was a fantastic change. We were able to get more patients involved, and we cut it down to an hour once a week for 6 weeks instead of 6 hours of lectures in 1 day. This allowed more people to participate and saved a lot of money. We will continue this going forward.

Source: Nonprofit submitted responses

Previous: Leadership & Adaptability

...   Culture & Community


This score provides an assessment of the organization's culture and connectedness to the community it serves. Learn more about how and why we rate Culture & Community.


Culture & Community Score

Not Currently Scored

Musella Foundation for Brain Tumor Research & Information Inc. is currently not eligible for a Culture & Community score because we have not received its Constituent Feedback or Diversity, Equity, & Inclusion data. Nonprofit organizations are encouraged to fill out the How We Listen and Equity Practices sections of their Candid profile.

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.


Back to Overall

Culture & Community Report

Unscored

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

Constituent Feedback

Diversity, Equity, & Inclusion


This organization has not provided information regarding the diversity, equity and inclusion (DEI) practices it is presently implementing. As such, the organization has not earned a score on this metric. Charity Navigator believes nonprofit organizations implementing effective DEI policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.


Methodology


We are utilizing data collected by Candid to document and assess the DEI practices implemented by the organization. Nonprofit organizations are encouraged to fill out the Equity Strategies section of their Candid profiles to receive a rating.


Learn more about the methodology.

Constituent Feedback


Constituent Feedback and Listening Practice data are not available for this organization. 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.



Methodology


We've partnered with 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.


Learn more about the methodology.

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. Below you can find more information about the metrics we currently evaluate in this beacon and their relevance to nonprofit performance.


Constituent Feedback


Diversity, Equity, and Inclusion

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