Your donation attempt encountered a problem. Please refresh the page to try again.
You're faster than our page! Give the page a little longer to finish loading and try your donation again.
New York NY | IRS ruling year: 1987 | EIN: 13-3380237
The Jeffrey Modell Foundation was established by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of pneumonia due to an underlying Pr ... (More)
The Jeffrey Modell Foundation was established by Vicki and Fred Modell in memory of their son Jeffrey, who died at the age of 15 of pneumonia due to an underlying Primary Immunodeficiency (PI) disease. The Foundation is dedicated to early and precise diagnosis, meaningful treatments, and ultimately cures of the ever increasing known PI Diseases. Our focus is: to affirm our absolute commitment to clinical and basic research in order to better understand and treat PI; to serve as a national and international source for the dissemination of information and education into the diagnosis and treatment of genetic immunodeficiencies; to serve as an advocate on behalf of patients and families to assure their access to excellent and comprehensive care; and to promote public awareness of the PI diseases through programs. (Less)
Great
This charity's score is 94%, 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: 90% Accountability & Finance, 10% Leadership & Adaptability. 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.
| Date Published | Form 990 FYE | Overall Score | Overall Rating |
| Rating Version: 2.1 | |||
| 7/1/2022 | 2020 | 92.92 | |
| 6/1/2021 | 2019 | 95.31 | |
| 4/1/2020 | 2018 | 97.12 | |
| 3/1/2019 | 2017 | 93.94 | |
| 5/1/2018 | 2016 | 95.08 | |
| 4/1/2018 | 2016 | 94.32 | |
This organization received multiple star ratings within this fiscal year, due to an update to its Accountability and Transparency data and/or the receipt of an amended Form 990. | |||
| 5/1/2017 | 2015 | 98.23 | |
| 6/1/2016 | 2014 | 94.82 | |
| Rating Version: 2.0 | |||
| 4/1/2016 | 2014 | 84.91 |  |
| 7/1/2015 | 2013 | 74.65 |  |
| 5/1/2014 | 2012 | 89.76 | |
| 11/1/2013 | 2011 | 91.42 | |
| 4/1/2013 | 2011 | 84.03 | |
| 2/1/2013 | 2010 | 84.43 | |
| 3/1/2012 | 2010 | 71.00 | |
| 10/1/2011 | 2009 | 75.95 | |
| Rating Version: 1.0 | |||
| 2/1/2011 | 2009 | 98.92 | |
| 6/1/2010 | 2008 | 85.72 | |
| 4/1/2009 | 2007 | 84.54 | |
| 4/1/2008 | 2006 | 99.18 | |
| 3/1/2007 | 2005 | 99.33 | |
| 2/1/2006 | 2004 | 99.27 | |
| 5/1/2005 | 2003 | 99.25 | |
The IRS is significantly delayed in processing nonprofits' annual tax filings (Forms 990). As a result, the Accountability & Finance score for Jeffrey Modell 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.
Jeffrey Modell Foundation has earned a 93% 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 2020, which is the most recent Form 990 currently available to us.
Learn more
Full Credit
Partial Credit
No Credit
Not Applicable
Charity Navigator looks to confirm on the Form 990 that the organization has these governance practices in place.
Sources Include: IRS Form 990
| Independent Voting Board Members ... (More) 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. Our analysts check the Form 990 to determine if the independent Board members are a voting majority and also at least five in number. (Less) | |
| No Material Diversion of Assets ... (More) A diversion of assets – any unauthorized conversion or use of the organization's assets other than for the organization's authorized purposes, including but not limited to embezzlement or theft – can seriously call into question a charity's financial integrity. We check the charity's last two Forms 990 to see if the charity has reported any diversion of assets. If the charity does report a diversion, then we check to see if it complied with the Form 990 instructions by describing what happened and its corrective action. This metric will be assigned to one of the following categories:
| |
| Audited Financials Prepared by Independent Accountant ... (More) Audited financial statements provide important information about financial accountability and accuracy. They should be prepared by an independent accountant with oversight from an audit committee. (It is not necessary that the audit committee be a separate committee. Often at smaller charities, it falls within the responsibilities of the finance committee or the executive committee.) The committee provides an important oversight layer between the management of the organization, which is responsible for the financial information reported, and the independent accountant, who reviews the financials and issues an opinion based on its findings. We check the charity's Form 990 reporting to see if it meets this criteria.
| |
| Does Not Provide Loan(s) to or Receive Loan(s) From Related Parties ... (More) Making loans to related parties such as key officers, staff, or Board members, is not standard practice in the sector as it may divert the charity's funds away from its charitable mission and can lead to real and perceived conflict-of-interest problems. This practice is discouraged by sector trade groups which point to the Sarbanes-Oxley Act when they call for charities to refrain from making loans to directors and executives. And the IRS is concerned enough with the practice that it requires charities to disclose on their Form 990 any loans to or from current and former officers, directors, trustees, key employees, and other "disqualified persons." Furthermore, some state laws go so far as to prohibit loans to board members and officers. And although employees and trustees are permitted to make loans to charities, this practice can also result in real and/or perceived conflict of interest problems for the charity. Furthermore, it is problematic because it is an indicator that the organization is not financially secure. (Less) | |
| Documents Board Meeting Minutes ... (More) An official record of the events that take place during a board meeting ensures that a contemporaneous document exists for future reference. Charities are not required to make their Board meeting minutes available to the public. As such, we are not able to review and critique their minutes. For this performance metric, we are checking to see if the charity reports on its Form 990 that it does keep those minutes. In the future, we will also track and rate whether or not a charity keeps minutes for its committee meetings. (Less) | |
| Distributes 990 to Board Before Filing ... (More) Providing copies of the Form to the governing body in advance of filing is considered a best practice, as it allows for thorough review by the individuals charged with overseeing the organization. The Form 990 asks the charity to disclose whether or not it has followed this best practice. If the charity has not distributed its Form 990 to the board before filing, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Does not Compensate Board Members ... (More) The IRS requires that any compensation paid to members of the charity's governing body be listed on the Form 990. Furthermore, all members of the governing body need to be listed whether or not they are compensated. It is not unusual for some members of the board to have compensation listed. The executive director of the organization frequently has a seat on the board, for instance, and is compensated for being a full time staff member. However, it is rare for a charity to compensate individuals only for serving on its Board of Directors. Although this sort of board compensation is not illegal, it is not considered a best practice. (Less) | |
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
| Conflict of Interest ... (More) Such a 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 or director of the organization. Charities are not required to share their conflict of interest policies with the public. Although we can not evaluate the substance of its policy, we can tell you if the charity has one in place based on the information it reports on its Form 990. If the charity does not have a Conflict of Interest policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| Whistleblower ... (More) This policy outlines procedures for handling employee complaints, as well as a confidential way for employees to report any financial mismanagement. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. (Less) | |
| Records Retention and Destruction ... (More) Such a policy establishes guidelines for handling, backing up, archiving and destruction of documents. These guidelines foster good record keeping procedures that promotes data integrity. Here we are reporting on the existence of a policy as reported by the charity on its Form 990. If the charity does not have a Records Retention and Destruction Policy, then we deduct 4 points from its Accountability and Transparency score. (Less) | |
| CEO Compensation Process ... (More) This process indicates that the organization has a documented policy that it follows year after year. The policy should indicate that an objective and independent review process of the CEO's compensation has been conducted which includes benchmarking against comparable organizations. We check to be sure that the charity has reported on its Form 990 its process for determining its CEO pay. (Less) | |
| Donor Privacy ... (More) Donors can be reluctant to contribute to a charity when their name, address, or other basic information may become part of donor lists that are exchanged or sold, resulting in an influx of charitable solicitations from other organizations. Our analysts check the charity's website to see if the organization has a donor privacy policy in place and what it does and does not cover. Privacy policies are assigned to one of the following categories:
The privacy policy must be specific to donor information. A general website policy which references "visitor" or "user" personal information will not suffice. A policy that refers to donor information collected on the website is also not sufficient as the policy must be comprehensive and applicable to both online and offline donors. The existence of a privacy policy of any type does not prohibit the charity itself from contacting the donor for informational, educational, or solicitation purposes. (Less) | |
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
| CEO Salary Listed on 990 ... (More) Charities are required to list their CEO's name and compensation on the Form 990. Our analysts check to be sure that the charities complied with the Form 990 instructions and included this information in their filing. (Less) | |
| Board of Directors Listed on Website ... (More) Our analysts check to see if the charity lists Board members on its website. Publishing this information enables donors and other stakeholders to ascertain the make up of the charity's governing body. This enables stakeholders to report concerns to the Board. Charity Navigator does not cross-check the Board members listed on the website with that reported on the Form 990, because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's Board members may have changed, and the charity typically reflects those more recent changes on the website. (Less) | |
| Key Staff Listed on Website ... (More) It is important for donors and other stakeholders to know who runs the organization day-to-day. Charity Navigator does not cross-check the leadership listed on the website with that reported on the Form 990 because the latter often isn't available until more than a year after the charity's fiscal year ends. In that time, the charity's leadership may have changed and the charity typically reflects those more recent changes on the website. In other words, since the Form 990 isn't especially timely, it can not be used to verify the leadership information published on the charity's site. (Less) | |
| Audited Financial Statements Listed on Website ... (More) We check the charity's website to see if it has published its audited financial statements for the fiscal year represented by the most recently filed IRS Form 990. It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. We currently rate charities on whether or not they publish their audit on their website. (Less) | |
| Form 990 Available on Website ... (More) We check the charity's website to see if it has published its most recently filed IRS Form 990 (a direct link to the charity's 990 on an external site is sufficient). It is important for donors to have easy access to this financial report to help determine if the organization is managing its financial resources well. (Less) | |
Full CreditPartial CreditNo CreditNot ApplicableLiabilities to Assets Ratio - 0.00% - 10/10 ptsLiabilities to Assets Ratio - 0.00% - 10/10 pts
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
Working Capital Ratio - 5.73 years - 10/10 ptsWorking Capital Ratio - 5.73 years - 10/10 pts
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
Fundraising Efficiency - $0.02 - 10/10 ptsFundraising Efficiency - $0.02 - 10/10 pts
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
Administrative Expense Ratio - 4.80% - 10/10 ptsAdministrative Expense Ratio - 4.80% - 10/10 pts
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 Expense Ratio - 3.10% - 10/10 ptsFundraising Expense Ratio - 3.10% - 10/10 pts
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
Program Expense Ratio - 92.00% - 10/10 ptsProgram Expense Ratio - 92.00% - 10/10 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. 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
Program Expense Growth - -8.62% - 0/10 ptsProgram Expense Growth - -8.62% - 0/10 pts
Organizations that demonstrate consistent annual growth in program expenses are able to outpace inflation and thus sustain their programs year to year. These organizations also supply givers with greater confidence by maintaining broad public support for their programs. 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
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 this organizations key compensated staff members as identified by our analysts. 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
Frederick Modell, President
$395,000 (8.30% of Total Expenses)
Vicki Modell, Vice President
$295,000 (6.20% of Total Expenses)
Vanessa Tenembaum, Executive Director
$224,870 (4.73% of Total Expenses)
Current CEO and Board Chair can be found in the Leadership & Adaptability report below.
Source: IRS Form 990 (page 7), filing year 2020
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)
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 (Jeffrey Modell Foundation) or EIN (133380237) in the 'Search Term' field.
Not Currently Scored
Jeffrey Modell 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.
Learn More
Jeffrey Modell Foundation reported its two largest programs on its FY 2020 Form 990 as:
Spent in most recent FY
Percent of program expenses
Public Awareness Campaign
Spent in most recent FY
Percent of program expenses
Basic and Clinical Research Support
Jeffrey Modell Foundation cannot currently be evaluated by our Culture & Community methodology because we have not received data from the charity regarding its Constituent Feedback or Equity Practices strategies.
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
Jeffrey Modell 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 Jeffrey Modell Foundation (JMF) is a global patient organization devoted to early and precise diagnosis, treatments, and ultimate cures for Primary Immunodeficiency through clinical and basic research, physician education, patient support, advocacy, public awareness, newborn screening, and genetic sequencing. JMF was established in 1987 by Vicki and Fred Modell in memory of their son Jeffrey who died from complications of PI at the age of 15. The Foundation operates under the guiding principles of hope, advocacy, and action. JMF generates support through contributions from the general public, industry, and government agencies. The Foundation serves as a global resource and advocate for patients and families in addition to sponsoring physician symposia, conferences, educational events, and public awareness programs to better understand and treat PI across the world.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
The Jeffrey Modell Foundation works tirelessly to create a world in which there are cures for PI by advocating on behalf of patients and families, ensuring access to the best care, and supporting research efforts. JMF strives to make a difference in the lives of patients and families living with PI, and is committed to turn pain, despair, and suffering into comfort, hope, and health. The Foundation aspires to achieve global recognition as a source for the dissemination of information and education about PI in order for physicians and researchers to better understand and treat PI. JMF promotes public awareness of PI through programs involving governmental bodies in addition to lay, scientific, and medical communities.
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: The main goal of JMF is earliest possible diagnosis. PI is a genetic condition that is chronic, serious, and often fatal; however, early diagnosis through global newborn screening helps to save lives.
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Goal Two: JMF is dedicated to ensuring access to appropriate, meaningful treatments for PI. Our “Roots & Wings” program provides travel support for critically ill children requiring lifesaving treatment.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Goal Three: The goal of JMF is to support efforts to develop a cure for PI through basic and clinical research, physician education, public awareness and advocacy, so that all children enjoy a healthy future.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
Despite the shift to remote work, the Foundation’s leadership continued to encourage skill development throughout the pandemic. JMF’s leadership utilized virtual platforms to attend medical and leadership conferences, speak at patient forums, and connect with patients and families. Annual board meetings shifted to virtual platforms as a way to maintain connection and share updates with members of the Foundation across the globe. These efforts to better communicate also enhanced the Jeffrey Modell Center Networks, in terms of center operations, patient visits, and the dissemination of information and timely safety updates to patients and families. Communicating with leaders across the Networks continues to encourage leadership development of site and center directors, young researchers and physicians, patient organizations, and advocacy partners.
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
Networks of Collective Impact Efforts
Thought Leadership
Raising Awareness
Community Building
Policy Advocacy
Advocacy is at the core of JMF's mission. JMF engages with world renowned thought leaders in public policy and immunology and has developed strategic partnerships over its thirty-five years of operation to forward its mission. The Jeffrey Modell Centers Network was created to meet the rising need for referrals, diagnosis, and treatment at specialized centers for patients with PI. The JMCN is a global resource for the dissemination of information and education about PI. JMF has led advocacy efforts for basic and clinical research, physician education, public awareness programs, and newborn screening at the Senate and House Appropriations Committees of Health. JMF regularly publishes research in top scientific journals, presents at conferences, and supports training for young researchers. In 2004, JMF initiated the first national PSA campaign about PI. The “When I Grow Up” campaign resulted in a tenfold increase in the reported number of patients identified, diagnosed and treated.
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.
At the onset of the pandemic, all staff and Foundation operations were immediately shifted to remote work until safety restrictions were lifted. The Foundation updated its national PSA campaign to encourage mask wearing in order to protect the public, especially the vulnerable community of individuals living with PI. The Foundation continued its advocacy efforts, attending conferences and trainings virtually, and participating in online patient forums. Throughout the pandemic, the JMCN continued to support individuals impacted by PI, working endlessly to care for patients who were unwell, vulnerable, and understandably, afraid. When staff returned to the office, all local safety protocols were taken into consideration and followed, including social distancing, staggering and reducing in-person hours, nightly office cleaning and increased sanitation efforts, and encouraging remote work when possible. Foundation operations continue to be flexible, shifting and changing as necessary based on ongoing external changes in the New York office as well as Centers in other countries.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
The Giving Basket is having some issues. If you wish to donate, please refresh the page. If the problem persists contact us.
Cart ID: Not Assigned
The Giving Basket is having some issues. If you wish to donate, please refresh the page. If the problem persists contact us.
Cart ID: Not Assigned
