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637 WEST HWY 50 NO 195
O'Fallon IL 62269
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637 WEST HWY 50 NO 195
O'Fallon IL 62269
O'Fallon IL | IRS ruling year: 2015 | EIN: 47-1326501
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.
Great
This charity's score is 100%, 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: 85% Impact & Results, 10% Leadership & Adaptability, 5% Culture & Community. 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!
Not Currently Scored
Charity Navigator is unable to evaluate this nonprofit at this time. Please see our Encompass Rating methodology for more information.
No Data Available
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.
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.
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 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)
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 (Living Lfs Inc.) or EIN (471326501) 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.
Learn more
Program
LFS Hardship Grants
Activities
The nonprofit provides financial assistance to patients with medical conditions.
Program Type
Financial Assistance for Medical Patients
Beneficiaries Served
People with cancer, families
Program Geography
Living LFS serves the Li-Fraumeni syndrome community worldwide. Previous hardship grant recipients have lived in the United States, Australia, Canada, UK, Peru, and India.
Time Period of Data
1/1/21 to 12/31/21
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
$24,660 program costs + $0 partner costs + $0 beneficiary costs = $24,660 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
$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]
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
Score
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
Learn more
Full Credit
Partial Credit
No CreditConstituent Feedback - Data Available100/100 points Constituent Feedback - Data Available100/100 points
100% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. The methodology leveraged for Constituent Feedback is based on The Core Principles of Constituent Feedback, which describes listening and responding well to feedback. Charity Navigator participates in a consortium with other feedback experts and leading nonprofit infrastructure platforms to drive Constituent Feedback's advancement, promotion, and data collection.
How is your organization using feedback from the people you serve?
To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve
What challenges does your organization face in collecting feedback from the people you serve?
Staff find it hard to prioritize feedback collection and review due to lack of time
Equity Practices - No Data AvailableUnscored Equity Practices - No Data AvailableUnscored
This organization has not provided information regarding the Equity Practices it is presently implementing. As such, the organization has not earned a score on this metric. This assessment demonstrates the importance of implementing practices that contribute positively to an organization's overall culture, both internally and with respect to community engagement. Furthermore, equity centered frameworks and similar approaches have drawn much attention from donors, experts, and sector leaders who underscore its value to the nonprofit's overall health and capacity for mission success. Currently, the Equity Strategies Checklist assessment consists of practices and policies that promote racial equity in their operations and programs (per the Equity Strategies checklist administered by Candid). As we refine our DEI assessment, Charity Navigator partners with DEI consultants and field experts to broaden and deepen this work.
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
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 10/10 points Vision 10/10 points
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.
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 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 Type: Grow, expand, scale or increase access to the existing programs and services.
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 Type: Grow, expand, scale or increase access to the existing programs and services.
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.
Goal Type: This goal reflects our commitment to further our advocacy work for our organization and or cause area.
Leadership Development 15/15 points Leadership Development 15/15 points
The nonprofit provides evidence of investment in leadership development
Describe an investment in leadership
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.
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
Raising Awareness
Community Building
What are this organization’s external mobilizaton efforts?
Living LFS' strategic partnerships and collective impact efforts include businesses and non-profit organizations such as Snarky Cancer, Imerman Angels, Coalition Against Childhood Cancer, the EDISYN Consortium, Global Genes, and ThinkGenetic. In 2021 Living LFS established LFS Awareness Month and Day to educate the general public about the importance of Li-Fraumeni syndrome and the TP53 gene (the "guardian of the genome") and to raise awareness that unlocking LFS could unlock cures for many cancers. Learn more at lfsawareness.com. Living LFS is publicly active, educating and connecting our community on livinglfs.org, on Facebook, Instagram, LinkedIn, Twitter, TikTok, and an email list. In addition, Living LFS hosts two large and active private support groups on Facebook, one for those with Li-Fraumeni syndrome (LFS), and one for LFS family and friends.
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.
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.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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