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PO BOX 6723
Florence KY 41022-6723
Florence KY | IRS ruling year: 1995 | EIN: 43-1709945
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 93%, 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: 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.
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 As a result, the Accountability & Finance score for Shwachman Diamond Syndrome Foundation Inc. is outdated and the overall rating may not be representative of its current operations.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.
Shwachman Diamond Syndrome Foundation Inc. has earned a 80% 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.
Learn more
Full Credit
Partial Credit
No Credit
Not ApplicableBoard Composition - 12/12 - 35/35 ptsBoard Composition - 12/12 - 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 - Missing - 0/5 ptsConflict of Interest Policy - Missing - 0/5 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 - Missing - 0/5 ptsBoard Meeting Minutes - Missing - 0/5 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 - 1.52% - 15/15 ptsLiabilities to Assets Ratio - 1.52% - 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 - 87.74% - 25/25 ptsProgram Expense Ratio - 87.74% - 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)
Study and research (non-scientific) (BMF activity code: 124)
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.
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.
Shwachman Diamond Syndrome Foundation Inc. reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Revenue
Grants Received
How COVID-19 impacted the organization's operations financially:
People were not working and had no funds to make donations
How COVID-19 impacted the organization's delivery of programs:
We were unable to have family or medical conferences.
How this organization adapted to changing conditions caused by COVID-19:
Used on- line educational sessions
Innovations the organization intends to continue permanently after the pandemic:
Our in-line educational programs.
Shwachman Diamond Syndrome Foundation Inc. has earned a 100% for the Impact & Results beacon. See the metrics below for more information.
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.
Learn more
Full CreditPartial CreditNo CreditNot Applicable
Program
Shwachman-Diamond Syndrome
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
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
$30,000 program costs + $0 partner costs + $0 beneficiary costs = $30,000 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
$30,000 total costs / $30,000 of financial assistance provided = roughly $670 provides $670 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 80 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 65.
Determination
Highly cost-effective
Shwachman Diamond Syndrome Foundation Inc. reported its three largest programs on its FY 2019 Form 990 as:
Spent in most recent FY
Percent of program expenses
PROVIDED RESEARCH GRANTS FOR THE STUDY OF THE RARE DISEASE SHWACHMAN-DIAMOND SYNDROME
Spent in most recent FY
Percent of program expenses
PUBLISHED NEWSLETTERS,PUBLIC SERVICE ANNOUNCEMENTS AND GAVE FAMILY SUPPORT TO KEEP PUBLIC AWARENESS OF THE DISEASE. CONDUCTED GENERAL OPERATIONS.
Spent in most recent FY
Percent of program expenses
SPONSORED AND CONDUCTED VARIOUS EDUCATIONAL CONFERENCES ABOUT SHWACHMAN-DIAMOND SYNDROME
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.
Learn More
Shwachman Diamond Syndrome Foundation Inc. 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
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 ptsVision - 10/10 pts
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 profession about this ultra rare disease. To advocate and fund research for curative therapies.
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: To continue to advocate for patients
Goal Type: Grow, expand, scale or increase access to the existing programs and services.
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
Attending conferences and receiving guidance from NORD.
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
Policy Advocacy
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 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.
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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