Living Lfs Inc.
Living Lfs Inc.
URL not available
2501 CHATHAM RD STE N
Springfield IL 62704-4188
Springfield IL | IRS ruling year: 2015 | EIN: 47-1326501
Organization Mission
Mission not available
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URL not available
2501 CHATHAM RD STE N
Springfield IL 62704-4188
Springfield IL | IRS ruling year: 2015 | EIN: 47-1326501
Organization Mission
Mission not available
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.
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. But please note, that the IRS is significantly delayed in processing nonprofit's annual tax filings. That may mean that this entity has electronically filed additional Forms 990 but they have yet to be processed and made public by the IRS.
To ensure year-to-year consistency the Encompass Rating System's Finance & Accountability 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.
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No Data Available
Revenue and expense data is not available 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 six years.
No Data Available
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 six years.
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.
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.
Living Lfs Inc. reported being impacted by COVID-19 in the following ways:
Program Delivery
How COVID-19 impacted the organization's operations financially:
As Living LFS is all-volunteer and all donations go directly to our programs, our financial structure was not affected by COVID-19.
How COVID-19 impacted the organization's delivery of programs:
We were planning a 2021 family camp for our patient community, which had to be postponed. Funding that had been raised for the event was instead distributed as hardship grants to our community members in need.
How this organization adapted to changing conditions caused by COVID-19:
We established a twice-annual LFS hardship grant program and began planning a 2022 family camp.
Innovations the organization intends to continue permanently after the pandemic:
Our biannual LFS hardship grants and our family camps, either annual or biennial, will be permanent programs.
Living Lfs 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.
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Program
LFS Hardship Grants
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
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 + 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 $910 provides $910 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
Living Lfs Inc. has earned a 100% for the Culture & Community beacon. See the metrics below for more information.
This beacon provides an assessment of the organization's culture and connectedness to the community it serves.
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100% of beacon score
This organization reported that it is collecting feedback from the constituents and/or communities it serves. Charity Navigator believes nonprofit organizations that engage in inclusive practices, such as collecting feedback from the people and communities they serve, may be more effective.
Who are the people you serve with your mission? Describe briefly.
Living LFS serves those living with Li-Fraumeni syndrome (LFS), a genetic cancer condition.
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.)
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
With whom does your organization share the feedback you got from the people you serve?
The people we serve, Our board, Our community partners
How has asking for feedback from the people you serve changed your relationship with them or shifted power - over decisions, resources, rules or in other ways - to them?
Acting on feedback from the LFS community has allowed community members to take ownership of not only our programs, but also our organization itself. Community feedback drives the decisions regarding where and how our funds are spent and what activities we prioritize. In return, community members volunteer and support the initiatives that matter most to them.
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
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
Every aspect of our 2022 Family Camp was determined based on surveyed feedback from our community. The 2022 camp venue was chosen based on feedback that attendees wanted to be closer to a major airport. Community feedback determined everything from how we navigated COVID both before and during camp, to who they bunked with, to what talks and activities were offered. Thanks to this feedback, our 2022 camp was an overwhelming success.
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. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Living Lfs 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.
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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.
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
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.
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.
The nonprofit provides evidence of leadership through focusing externally and mobilizing resources for the mission.
Strategic Partnerships
Networks of Collective Impact Efforts
Raising Awareness
Community Building
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.
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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