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6030 SANTO ROAD STE 1 420878
San Diego CA 92142-7001
San Diego CA | IRS ruling year: 2008 | EIN: 26-2051377
Organization Mission
Mission not available
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: 80% Accountability & Finance, 10% Leadership & Adaptability, 10% 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!
Lgs Foundation has earned a 90% 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 2021, which is the most recent Form 990 currently available to us.
Learn more
Full Credit
Partial Credit
No Credit
Not ApplicableBoard Composition - 7/7 - 35/35 ptsBoard Composition - 7/7 - 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 - Listed - 5/5 ptsConflict of Interest Policy - Listed - 5/5 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 - Documented - 5/5 ptsBoard Meeting Minutes - Documented - 5/5 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 - 17.28% - 15/15 ptsLiabilities to Assets Ratio - 17.28% - 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 - 79.78% - 25/25 ptsProgram Expense Ratio - 79.78% - 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
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 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 (Lgs Foundation) or EIN (262051377) 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.
Lgs Foundation reported being impacted by COVID-19 in the following ways:
Program Delivery
Fundraising Capacity
Staffing
Administrative Capacity
Grants Received
Grants Sent
How COVID-19 impacted the organization's operations financially:
All program and events become 100% online, which brought a drop in attendance and sponsorships. Initially, individual giving decreased, but rebounded in year two.
How COVID-19 impacted the organization's delivery of programs:
Family Support: In-person support events halted, including our MeetUp groups, regional Ambassador visits, and the Family Conference. Online support attendance slowed to a stop for a while due to "Zoom meeting burnout." Research: We were unable to hold our annual in-person "Research Round Table" where key LGS researchers and scientists typically gather to discuss the most current data related to LGS. And, as research labs across the country totally shut down, we received almost no research funding requests which paralyzed us from funding any new grants. Before Covid-19 hit, we produced an annual "Walk 'n Wheel" event in Florida to raise awareness of the disease and to raise dollars to fund LGS research. During Covid, we moved this to an online event so more people could participate by following the event online. LGS family and friends were also empowered to create their own Peer-to-Peer Walks in their communities.
How this organization adapted to changing conditions caused by COVID-19:
During this challenging season, we took the time to build and strengthen our organization. We were all at home, which allowed us to intentionally be more strategic and enhance our operations, which included the hire of a Director of Operations. The world learned how to "Zoom," which provided more opportunities to connect with stakeholders worldwide, while also encouraging our families to become more confident using an online platform.
Innovations the organization intends to continue permanently after the pandemic:
We will continue to promote Peer-to-Peer fundraising efforts. We jumped into this during Covid, and our community members remain excited to engage in supporting the organization in this way. We continue to develop ideas, guidelines, and support for those who plan to organize their own Peer-to-Peer event. Though we are returning to mostly in-person events, we will continue to make the online streaming options available when possible. Gathering in-person means so much to our families, yet many are unable to travel due to family challenges associated with LGS. The streaming element allows them to experience some portions of the event. Increased virtual activities has been a very good thing for expanding our reach to many of our families who are so isolated due to LGS.
Not Currently Scored
Lgs Foundation cannot currently be evaluated by our Impact & Results methodology because either (A) it is eligible, but we have not yet received data; (B) we have not yet developed an algorithm to estimate its programmatic impact; (C) its programs are not direct services; or (D) it is not heavily reliant on contributions from individual donors.
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.
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No 990 Program Data Found
Lgs Foundation has earned a 93% 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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Full CreditPartial CreditNo CreditNot ApplicableConstituent Feedback - Data Available - 100/100 ptsConstituent Feedback - Data Available - 100/100 pts
30% 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.
How is your organization collecting feedback from the people you serve?
Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Paper surveys, Case management notes, Community meetings or town halls, Other means
How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, 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 staff, Our board, Our funders, Our community partners
What challenges does your organization face in collecting feedback from the people you serve?
We don't have any major challenges to collecting feedback
Briefly describe a recent change that your organization made in response to feedback from the people you serve.
Implementation of regional "MeetUps" through our ambassador program, which provides opportunities for families to gather for information and discussion based on their region. Implementation of webinar series, which particularly garnered interest from constituents whom were not able to attend in-person conferences or regional meetings
Equity Practices - Data Available - 90/100 ptsEquity Practices - Data Available - 90/100 pts
70% of beacon score
This organization's score of 90 is a passing score. The organization reported that it is implementing 7 Equity Practices. Charity Navigator believes nonprofit organizations implementing effective equity policies and practices can enhance a nonprofit's decision-making, staff motivation, innovation, and effectiveness.
Equity Practices (3/7) | |
|---|---|
We review compensation data across the organization (and by staff levels) to identify disparities by race. | |
We ask team members to identify racial disparities in their programs and/or portfolios. | |
We analyze disaggregated data and root causes of race disparities that impact the organization/'s programs, portfolios, and the populations served. | |
We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support. | |
We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders. | |
We disaggregate data by demographics, including race, in every policy and program measured | |
We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization. | |
Equity Policies and Procedures (4/7) | |
|---|---|
We use a vetting process to identify vendors and partners that share our commitment to race equity. | |
We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions. | |
We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization. | |
We have community representation at the board level, either on the board itself or through a community advisory board. | |
We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability. | |
We measure and then disaggregate job satisfaction and retention data by race, function, level, and/or team. | |
We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization. | |
Lgs Foundation 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
The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.
Vision - 10/10 ptsVision - 10/10 pts
The nonprofit organization presents evidence of strategic thinking through articulating the organization’s vision.
We are guided by our vision to end the suffering and devastation caused by LGS.
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: Support, Empower, Educate (SEE): Develop sustainable programs that support, educate, and empower LGS families; strengthen volunteer program; share quality resources; empower families to find best care
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Two: Accelerate Research: Distribute research funding to advance LGS basic, clinical, and translational research, build the next generation of researchers; ensure LGS patient voice is heard; drive research
Goal Type: Focus on core programs to achieve mission and scale back on programs not seen as core.
Goal Three: Build & Strengthen Organization: Grow and improve upon systems and processes that encourage effective & efficient operations; invest in leadership, staff, and skill development.
Goal Type: Invest in the capacity of our organization (financial, management, technical, etc.).
Leadership Development - 15/15 ptsLeadership Development - 15/15 pts
The nonprofit provides evidence of investment in leadership development
Key organizational leaders are encouraged to collaborate with and learn from others who also work in the "world of rare diseases" at the national and international level. Staff members are also encouraged to use a portion of their time for online and in-person training opportunities.
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
Community Building
Policy Advocacy
Collaboration is key to mobilizing for our mission, and key partners include the "American Epilepsy Society" and "Danny Did Foundation," Our Executive Director, Board members, and our Medical Science Advisory Board members promote and/or participate in thought leadership activities such as our "Research Roundtable" and "Meeting of the Minds," In addition, our Executive Director is often invited to speak from her experience as an LGS mom, and an LGS scientist. Our Ambassador and Navigator programs train and empower regional volunteers, with LGS experience, to help other caregivers navigate the maze of an LGS diagnosis. Our leadership team values the collective impact made by participation with organizations such as the "Rare as One Network" and "Seizure Action Plan Coalition." The "Advocates for LGS" program is comprised of community members who recognize the importance of the patient voice in advocating for government funding and support for LGS-related issues and causes.
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.
2021 was a pivotal year as we held our first ever LGS Research Meeting of the Minds and heard from doctors, researchers, and patient families about how we will find better treatments and cures for LGS. Powerful discussions from that event led us to organize our new "Medical Science Advisory Board" and to launch our "Cure LGS 365 Grant" program. The LGS community stepped up and answered the call in 2021 and their involvement continues. Through the tireless efforts of the LGS Foundation staff and our community of friends, families, and caring individuals, new fundraising strategies are being implemented to raise more for research, support our awesome siblings, assist with durable medical equipment costs, and so much more. After being isolated at home during Covid-19, we were thrilled to gather in-person again for our 7th Annual Family and Professionals Conference. Nearly 300 individuals attended in person, and 75 more participated virtually. including LGS families, pharmaceutical representatives, and LGS Foundation Board and staff members. The program also featured 46 expert speakers who shared critical information and spent time answering questions from family members. A number of volunteers provided tremendous support. Our annual "Walk n Wheel" fundraising event in the spring raised nearly $50,000 for research with in-person and virtual participation. Upcoming efforts in the fall will focus on LGS International Awareness Day events that will raise funds and educate about this horrible disease. Our increased stamina and strategy have allowed us to hire three new staff members: Office Manager, Development Manager, an an Assistant Director of Research. The devastating impact of LGS continues and we still need to find a cure. It'll take more time and money, but together with partners and stakeholders, we can solve the mysteries of LGS and offer increased hope to the families whose lives have been impacted. The challenges remain tough, but so do we.
Impact & Results
Accountability & Finance
Culture & Community
Leadership & Adaptability
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