Shiloh IL | IRS ruling year: 2015 | EIN: 47-1326501
An EIN is a unique nine-digit number that identifies a business for tax purposes.
An EIN is a unique nine-digit number that identifies a business for tax purposes.
Organization Mission
At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.
Rating Information
Great
This charity's score is 98%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.
Charity Navigator's ratings previously did not consider Leadership & Adaptability, Culture & Community, or Impact & Measurement. 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!
Living LFS Inc. cannot currently be evaluated by our Accountability & Finance methodology due to only having one year of electronically-filed IRS Form 990 data.
To ensure year-to-year consistency the Encompass Rating System's Accountability & Finance beacon analyzes the three-year average of some data provided through the IRS 990.
Charity Navigator currently only has one year of consecutive e-filed Forms 990 from the IRS for Living LFS Inc. under the EIN: 47-1326501.
Before Charity Navigator can evaluate Living LFS Inc., Living LFS Inc. will need to e-file for additional fiscal years.
Revenue and expense data is not available for this organization. This data is only available if this organization has at least one year of electronically-filed Form 990 data filed within the last $six years.
Salary of Key Persons - No Data Available
No Data Available
Salary of 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 3 years. In some cases, there may be an electronically-filed 990 on file but the nonprofit may have not included the information and therefore we cannot post it.
IRS Published Data (Business Master File) - Data Available
Organization that normally receives no more than one-third of its support from gross investment income and unrelated business income and at the same time more than one-third of its support from contributions, fees, and gross receipts related to exempt purposes. 509(a)(2) (BMF foundation code: 16)
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) - Data Available
The Form 990 is a document that nonprofit organizations file with the IRS annually. We leverage accountability and finance 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 (Living LFS Inc.) or EIN (471326501) in the 'Search Term' field.
Impact & Measurement
Score
98
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.
$24,660 total costs / $24,660 of financial assistance provided = roughly $1 provides a dollar's worth of financial assistance to a patient. [2021 USD]
Program Context
LFS Hardship Grants: This program provides financial assistance directly to patients and their families.
Data Time Period
1/1/21 to 12/31/21
Benchmark for Scoring
Impact scores of financial assistance to patients programs are based on income generated relative to cost. Programs receive an Impact 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. This program increases income for a patient with medical conditions by more than $2 for every $1 spent.
Methodology
This impact score was determined through the Financial Assistance for Medical Patients methodology which is fully detailed in the Charity Navigator Guide to Ratings. Analysis conducted in 2023 by Charity Navigator using data submitted by the nonprofit, theory and evidence from scientific research studies, and public datasets.
Data Source
The nonprofit submitted data on the dollar value of all financial assistance provided to patients, which we use to calculate the additional income received.
Measurement
93 out of 100 points
25% of Impact & Measurement score
Full Credit
Partial Credit
No Credit
The Measuring Outcomes assessment evaluates how well a charity tracks progress towards its mission's outcomes.
Displayed below are the responses provided by the charity for the Measuring Outcomes assessment. Each question is designed to address specific criteria, with responses eligible for full, partial, or no credit. Please refer to the scoring rubric for details on how responses are scored.
Selected program: LFS Hardship Grants, Submitted October 2024
Program Planning and Design
21 out of 21 points
This section assesses the use of crucial evaluation tools in program objective-setting and activities.
Charity leadership uses information collected to make decisions regarding programs
Agree, uses information collected to improve programs
Charity has shared understanding across staff of how programs lead to the goals a program achieves
Agree, has universal understanding of how programs achieve goals
Charity has documents and reviews how program activities lead to change
Agree, documents and reviews
Charity revisits how program activities lead to change
Agree, does revisit how program activities lead to change
Program Development
24 out of 28 points
This section assesses the consideration of stakeholders in program objectives and activities.
Charity identifies program target population needs in the following ways
Discussions or surveys with target population on how program activities best serve their needs
Charity considers practical, cultural, and political needs and interests of those served by program
Agree, charity is responsive to practical, cultural, and political needs
Charity uses SMART Goals
Agree, identified Specific, Measurable, Achievable, Relevant, and Time-Bound (SMART) goals
Data Collection and Analysis
19 out of 21 points
This section assesses the best practices used in collecting and analyzing program data.
Charity tracks program information in the following ways
Collects data before a program is initiated
Collects data during program implementation
Collects data when a program is complete
Charity collects programmatic information on those served by the program in the following ways
Identifies the number of those served by program
Collects demographic data of those served by program
Identifies the number of those successfully served by the program
Charity assesses program effectiveness at multiple points in time
Agree, collects information before and after a program is implemented
Reporting and Distribution of Results
21 out of 21 points
This section assesses reporting and disseminating program results.
Charity reports program results to key stakeholders
Reports results to stakeholders
Does not report results to stakeholders
Charity reports both favorable and unfavorable results
Yes, charity reports both favorable of unfavorable results
Use of Results
8 out of 10 points
This section assesses the use of results to guide learning.
Charity uses program results to inform future work for the following reasons
Sustain and secure funding
Inform strategic planning
Improve program operations
Inform how we create future programs
Culture & Community
Not Currently Scored
Living LFS 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.
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.
The nonprofit organization presents evidence of strategic thinking through articulating the organization's mission.
At Living LFS, we encourage, empower, and educate those living with Li-Fraumeni Syndrome by connecting them with care, resources, and others who are Living LFS.
Vision Statement
The nonprofit organization presents evidence of strategic thinking through articulating the organization's vision.
Our vision is to provide emotional support and resources to make living LFS easier.
Strategic Goals
The nonprofit organization presents evidence of strategic thinking and goal setting through sharing their most important strategic goals.
Goal One: To grow the Living LFS Jennifer Mallory Family Camp to accommodate more families with Li-Fraumeni syndrome; to expand the scope and capacity of camp educational sessions and recreational activities.
Goal Two: To provide more and larger LFS Hardship Grants to LFS families struggling to pay for cancer screening, treatment, special equipment, travel to cancer centers, living expenses, lost wages, etc.
Goal Three: To grow Li-Fraumeni Syndrome Awareness Month (March) and Li-Fraumeni Syndrome Awareness Day (March 20) activities to educate the public about the importance of LFS in finding cures for many cancers.
Leadership
30 out of 30 points
Full Credit
Partial Credit
No Credit
Investment in Leadership Development
The nonprofit provides evidence of investment in leadership development.
In 2022 Living LFS invested in having a board member take a comprehensive grant writing course and join a grant writers collective. In 2017, 2020 (just prior to the pandemic), and 2021 (virtual), Living LFS sent representatives to Rare Disease Week on Capitol Hill, to learn to advocate for the Li-Fraumeni syndrome and rare disease communities in front of members of Congress. In 2017 Living LFS sent a representative to the Global Genes Rare Patient Advocacy Summit to learn how members of the rare disease community can advocate for themselves with their elected leaders at all levels.
External Focus on Mobilizing Mission
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Collaborative Engagement
Social Promotion
Civic Engagement
Adaptability
30 out of 30 points
Full Credit
Partial Credit
No Credit
Adaptability Statement
30 out of 30 points
The nonprofit has an opportunity to tell the story of how the organization adapted to tremendous external changes in the last year.
When the COVID-19 pandemic made it necessary to cancel the 2021 Living LFS Family Camp, Living LFS diverted the funds raised for camp into LFS hardship grants for LFS families struggling with the costs of living with Li-Fraumeni syndrome and cancer, and compounded by the financial difficulties everyone felt as a result of the pandemic. The hardship grant program was so popular that Living LFS has committed to provide these grants biannually, and thanks to a vibrant donor community, was able to resume annual or biennial Family Camp plans in 2022.