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Florence KY | IRS ruling year: 1995 | EIN: 43-1709945
Organization Mission
RAISING AWARENESS OF AND SUPPORT FOR THE SHWACHMAN-DAIMOND SYNDROME DISEASE. THIS IS DONE THROUGH EDUCATIONAL CONFERENCES AND THE PUBLICAITON OF PERIODALCS SUCH AS N ... (More)
RAISING AWARENESS OF AND SUPPORT FOR THE SHWACHMAN-DAIMOND SYNDROME DISEASE. THIS IS DONE THROUGH EDUCATIONAL CONFERENCES AND THE PUBLICAITON OF PERIODALCS SUCH AS NEWSLETTERS AND BROUCHURES. RESEARCH GRANTS ARE ALSO AWARDED FOR THE STUDY OF THE SYNDROME. (Less)
Great
This charity's score is 91%, 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, weighted as follows: 33% Accountability & Finance, 57% Impact & Results, 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.
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Results. The historic rating mainly reflects a version of today’s Accountability and Finance score. More information on our previous rating methodologies can be found on our rating methodology page.
Rating histories are available for a growing number of rated organizations. Check back later to see if this organization has a rating history!
Score
Most Recent Fiscal Year:
FY 2021
This beacon provides an assessment of a charity's financial health (financial efficiency, sustainability, and trustworthiness) and its commitment to governance practices and policies.
Learn more
Full Credit
Partial Credit
No CreditMajority Independent Board Members - 100% independent members10 out of 10 points Majority Independent Board Members - 100% independent members10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. We check to see that a majority of board members are identified as independent on their tax form.
Source: IRS Form 990
Independent Board Size - 11 independent members10 out of 10 points Independent Board Size - 11 independent members10 out of 10 points
Industry professionals strongly recommend an independent governing body to allow for full deliberation and diversity of thinking on governance and other organizational matters. For most organizations, we check to see if the organization has at least three independent board members. For large, donor-funded organizations, we check to see if the organization has at least five independent board members
Source: IRS Form 990
Material Diversion of Assets - None10 out of 10 points Material Diversion of Assets - None10 out of 10 points
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 — also can seriously call into question a charity's financial integrity. We review the charity's most recent IRS Form 990 to see if the charity has reported any diversion of assets.
Source: IRS Form 990
Full CreditPartial CreditNo CreditWebsite Listed on Tax Form - Listed3 out of 3 points Website Listed on Tax Form - Listed3 out of 3 points
Charity Navigator looks for a website on the IRS 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 - Missing0 out of 7 points Conflict of Interest Policy - Missing0 out of 7 points
Charity Navigator looks for the existence of a conflict of interest policy on the IRS 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
Whistleblower Policy - Missing0 out of 7 points Whistleblower Policy - Missing0 out of 7 points
Charity Navigator looks for the existence of a whistleblower policy per the IRS 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
Document Retention and Destruction - Missing0 out of 7 points Document Retention and Destruction - Missing0 out of 7 points
Charity Navigator looks for the existence of a document retention and destruction policy per the IRS 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
Documents Board Meeting Minutes - No0 out of 3 points Documents Board Meeting Minutes - No0 out of 3 points
Charity Navigator looks to confirm on the IRS 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
Full CreditPartial CreditNo CreditTax Form Posted on Nonprofit's Website - Missing0 out of 3 points Tax Form Posted on Nonprofit's Website - Missing0 out of 3 points
For almost all charities, we check the charity's IRS Form 990 to see if it discloses that the Form 990 is available on the charity's website. As with the audited financial statement, donors need easy access to this financial report to help determine if the organization is managing its financial resources well.
Source: IRS Form 990
Full CreditPartial CreditNo CreditLiabilities to Assets: Ratio - 0.01%15 out of 15 points Liabilities to Assets: Ratio - 0.01%15 out of 15 points
The Liabilities to Assets Ratio is determined by Total Liabilities divided by Total Assets (most recent IRS Form 990). This ratio is an indicator of an organization's solvency and/or long-term sustainability.
Source: IRS Form 990
Program Expense: Ratio - 82.93%25 out of 25 points Program Expense: Ratio - 82.93%25 out of 25 points
The Program Expense Ratio is determined by Program Expenses divided by Total Expense (average of most recent three IRS Forms 990). This measure reflects the percent of its total expenses a charity spends on the programs and services it exists to deliver.
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
Joan Mowery, Acting Pres.
Compensation not entered
Christian Del Re, Director
Compensation not entered
Mary Balint, Secretary
Compensation not entered
Bryan Sample, Treasurer
Compensation not entered
Savannah Lillywhite, Director
Compensation not entered
Source: IRS Form 990 (page 7), filing year 2021
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
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 (Shwachman Diamond Syndrome Foundation Inc.) or EIN (431709945) in the 'Search Term' field.
Score
This beacon estimates the actual impact a charity has on the lives of those it serves, and determines whether it is making good use of donor resources to achieve that impact.
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Program
Shwachman-Diamond Syndrome
Activities
The nonprofit provides financial assistance to patients with medical conditions.
Program Type
Financial Assistance for Medical Patients
Beneficiaries Served
Children and youth, families, people with disabilities
Program Geography
We serve the entire United States
Time Period of Data
12/9/20 to 12/14/21
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
$31,414 program costs + $0 partner costs + $0 beneficiary costs = $31,414 total costs
We calculate impact, defined as the change in outcomes attributable to a program divided by the cost to achieve those outcomes.
Impact Calculation
$31,414 total costs / $31,414 of financial assistance provided = roughly $1 provides a dollar's worth of financial assistance to a patient. [2021 USD]
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 $2 for every $1 spent and a score of 80 if income increases by more than $1.25 for every $1 spent. If a nonprofit reports impact but doesn't meet the benchmark for cost-effectiveness, it earns a score of 65.
Determination
Highly cost-effective
Not Currently Scored
Shwachman Diamond Syndrome Foundation Inc. 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.
Score
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 CreditMission 10/10 points Mission 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission
RAISING AWARENESS OF AND SUPPORT FOR THE SHWACHMAN-DAIMOND SYNDROME DISEASE. THIS IS DONE THROUGH EDUCATIONAL CONFERENCES AND THE PUBLICAITON OF PERIODALCS SUCH AS NEWSLETTERS AND BROUCHURES. RESEARCH GRANTS ARE ALSO AWARDED FOR THE STUDY OF THE SYNDROME.
Vision 10/10 points Vision 10/10 points
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
To provide support and education to families affected by SDS. To educate the public and medical prof
Source: Nonprofit submitted responses
Goals 20/20 points Goals 20/20 points
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: To continue to advocate for patients
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Leadership Development 15/15 points Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
Attending conferences and receiving guidance from NORD.
Mobilizing for Mission 15/15 points Mobilizing for Mission 15/15 points
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?
We have developed an on line podcast to provide information about this disease and it’s impact on patients and their communities.
Adaptability Story 30/30 points Adaptability Story 30/30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
As COVID has curtailed most activities we have moved to social media to continue are awareness campaign.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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