PLATINUM2023

Lennox-Gastaut Syndrome (LGS) Foundation

LGS is tough. So are we.

aka LGS Foundation   |   San Diego, CA   |  www.lgsfoundation.org
GuideStar Charity Check

Lennox-Gastaut Syndrome (LGS) Foundation

EIN: 26-2051377


Mission

The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

Ruling year info

2008

Board President of LGS Foundation

Mrs Natalie Gilmore

Executive Director

Dr. Tracy Dixon-Salazar

Main address

6030 Santo Road, Suite 1 Unit 420878

San Diego, CA 92142 USA

Show more contact info

EIN

26-2051377

Subject area info

Genetics

Neurology

Pediatrics

Surgery

Epilepsy

Population served info

Families

Parents

Caregivers

People with disabilities

People with diseases and illnesses

NTEE code info

Neurology, Neuroscience (G96)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Tax forms

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

We seek to end the devastation and suffering caused by Lennox-Gastaut Syndrome (LGS).

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Patient Assistance Program

The LGS Foundation's Patient Assistance Program provides financial assistance to individuals with LGS to help pay for medical expenses not typically covered through insurance or other programs.

Population(s) Served
Families
People with diseases and illnesses

The Patient Navigator and Family Ambassador program is made up of family caregivers who have experienced the highs and lows of living with LGS. Our topical Navigators and regional Ambassadors are able to listen and support others on the LGS journey while sharing a wealth of helpful resources, tips and ideas. Our goal is to empower each family to be a strong voice for LGS awareness and become the best advocate for your child.

Population(s) Served
Families
People with diseases and illnesses

The LGS Foundation is dedicated to funding the highest caliber research on LGS and associated epilepsies. Our focus is on funding research projects to find better treatments and improve the quality of life for those living with LGS.

Population(s) Served
People with disabilities
People with diseases and illnesses
Caregivers
Families
Parents

Where we work

Affiliations & memberships

Rare As One 2023

National Organization for Rare Disorders (NORD) 2023

Epilepsy Alliance America 2023

Rare Epilepsy Network 2023

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of organizations applying for grants

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with disabilities, People with diseases and illnesses, Parents, Families

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The COVID-19 pandemic decreased the number of applications as research halted in many scientific labs worldwide.

Number of research studies funded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Caregivers, People with disabilities, People with diseases and illnesses, Parents, Families

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Holding steady

Context Notes

The COVID-19 pandemic decreased the number of applications as research halted in many scientific labs worldwide.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Number of new website visitors

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of requests for advocate products or information, including downloads or page views of online material

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

New Family Welcome Kits

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

We seek to end the devastation and suffering caused by Lennox-Gastaut Syndrome (LGS).

When the LGS Foundation was founded in 2008, there was no community of support for families living with LGS. The founders had one goal — to improve the lives of those impacted by LGS.

In the ensuing years, the fundraising and commitment of the LGS community have enabled the LGS Foundation to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments. We have also grown our community of support to over 7,000 members and increased our family support programs to target the needs of our growing number of LGS families.

The LGS Foundation has a steadfast commitment to improving lives and advancing LGS research. We also believe wholeheartedly that patient family engagement throughout the entire clinical trial and drug development process is crucial to saving time, money, and creating something meaningful for families. Because of this, our community has helped enable 4 new treatments for LGS, with several additional clinical trials already underway or soon starting. We have made incredible progress and many lives have been improved.

We Understand
-The unparalleled power of a community of support.
-The ongoing need to fund innovative research.
-The urgency in finding better treatments.
-The motivation of our donors to make an impact specifically in the fields of LGS and related epilepsies.
-The importance of transparency and accountability of not only our organization but also the researchers that we fund.
-The need for global collaboration in order to find cures.

Our Mission: The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.

Our Pillars: To accomplish our mission we must:

-Support, empower, and educate our community
-Accelerate research
-Raise awareness and build community
-Build and strengthen our organization

Our Theory Of Change: If we create meaningful and impactful, patient-driven programs guided by our pillars we will improve the lives of those impacted by LGS.

We have seven full-time staff members and more than 100 volunteers around the globe, all dedicated to supporting, educating, and empowering those living with LGS and the LGS community. We work together to raise awareness of the devastation of LGS, build our community, advocate for better treatments and cures, and fund research.

See Our Impact here:

https://www.lgsfoundation.org/our-impact/

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • 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, To understand people's needs and how we can help them achieve their goals

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Lennox-Gastaut Syndrome (LGS) Foundation
Fiscal year: Jan 01 - Dec 31
Financial documents
2022 2022 Form 990
done  Yes, financials were audited by an independent accountant. info

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Liquidity in 2022 info

SOURCE: IRS Form 990

3.97

Average of 2.87 over 10 years

Months of cash in 2022 info

SOURCE: IRS Form 990

11

Average of 18.9 over 10 years

Fringe rate in 2022 info

SOURCE: IRS Form 990

8%

Average of 1% over 10 years

Funding sources info

Source: IRS Form 990

Assets & liabilities info

Source: IRS Form 990

Financial data

SOURCE: IRS Form 990

Lennox-Gastaut Syndrome (LGS) Foundation

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Lennox-Gastaut Syndrome (LGS) Foundation

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.

Fiscal year ending: cloud_download Download Data

Lennox-Gastaut Syndrome (LGS) Foundation

Financial trends analysis Glossary & formula definitions

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

This snapshot of Lennox-Gastaut Syndrome (LGS) Foundation’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.

Created in partnership with

Business model indicators

Profitability info 2018 2019 2020 2021 2022
Unrestricted surplus (deficit) before depreciation $142,840 $98,465 $782,716 -$111,367 -$128,933
As % of expenses 50.6% 14.8% 204.7% -15.5% -9.4%
Unrestricted surplus (deficit) after depreciation $142,840 $98,465 $782,716 -$114,547 -$141,653
As % of expenses 50.6% 14.8% 204.7% -15.8% -10.3%
Revenue composition info
Total revenue (unrestricted & restricted) $424,900 $774,334 $1,165,055 $785,563 $1,363,205
Total revenue, % change over prior year -0.5% 82.2% 50.5% -32.6% 73.5%
Program services revenue 0.0% 0.0% 0.0% 2.5% 13.4%
Membership dues 0.0% 0.0% 0.0% 0.0% 0.0%
Investment income 0.0% 0.0% 0.0% 0.0% 0.0%
Government grants 0.0% 0.0% 0.0% 0.0% 0.0%
All other grants and contributions 95.5% 95.7% 100.0% 97.5% 86.6%
Other revenue 4.5% 4.3% 0.0% 0.0% -0.1%
Expense composition info
Total expenses before depreciation $282,060 $663,108 $382,339 $719,932 $1,366,507
Total expenses, % change over prior year -41.2% 135.1% -42.3% 88.3% 89.8%
Personnel 0.0% 0.0% 0.0% 12.2% 41.5%
Professional fees 71.1% 48.2% 64.8% 38.0% 5.6%
Occupancy 2.7% 0.0% 0.5% 0.4% 0.2%
Interest 0.0% 0.0% 0.0% 0.0% 0.0%
Pass-through 8.4% 11.7% 13.7% 13.0% 11.8%
All other expenses 17.9% 40.1% 20.9% 36.4% 41.0%
Full cost components (estimated) info 2018 2019 2020 2021 2022
Total expenses (after depreciation) $282,060 $663,108 $382,339 $723,112 $1,379,227
One month of savings $23,505 $55,259 $31,862 $59,994 $113,876
Debt principal payment $0 $0 $0 $0 $0
Fixed asset additions $0 $0 $0 $63,159 $0
Total full costs (estimated) $305,565 $718,367 $414,201 $846,265 $1,493,103

Capital structure indicators

Liquidity info 2018 2019 2020 2021 2022
Months of cash 25.8 8.0 35.9 21.2 11.0
Months of cash and investments 25.8 8.0 35.9 21.2 11.0
Months of estimated liquid unrestricted net assets 12.3 7.0 36.7 16.6 7.8
Balance sheet composition info 2018 2019 2020 2021 2022
Cash $606,990 $444,483 $1,143,458 $1,272,432 $1,250,455
Investments $0 $0 $0 $0 $5,712
Receivables $0 $178,684 $250,333 $142,000 $261,565
Gross land, buildings, equipment (LBE) $0 $0 $0 $63,159 $38,159
Accumulated depreciation (as a % of LBE) 0.0% 0.0% 0.0% 5.0% 41.7%
Liabilities (as a % of assets) 53.5% 37.9% 16.1% 17.3% 23.9%
Unrestricted net assets $288,394 $0 $0 $1,055,028 $913,375
Temporarily restricted net assets $0 N/A N/A N/A N/A
Permanently restricted net assets $0 N/A N/A N/A N/A
Total restricted net assets $0 $0 $0 $177,000 $302,631
Total net assets $288,394 $386,859 $1,169,575 $1,232,028 $1,216,006

Key data checks

Key data checks info 2018 2019 2020 2021 2022
Material data errors No No No No No

Operations

The people, governance practices, and partners that make the organization tick.

Documents
Letter of Determination is not available for this organization
Form 1023/1024 is not available for this organization

Board President of LGS Foundation

Mrs Natalie Gilmore

Natalie Gilmore President Hanover, PA Natalie completed her degree from Lynchburg College as an early education major and pursued her Master’s Degree as a Reading Specialist from Towson University. Prior to her daughter Lili being diagnosed with Infantile Spasms Syndrome, Natalie spent years teaching at St Paul’s School for Boys in Brooklandville, Maryland. Natalie, her husband John, and her daughter Lili reside in Hanover, PA. They have dedicated much of their life since their daughter’s diagnosis to bringing awareness to others about seizures and LGS. Natalie previously spent years on the board of Directors for the Abilities Network and they both are current board members of Lili’s Lift, a not-for-profit organization named after their daughter which assists families with Making Life More Accessible. During their free time, they enjoy spending time outdoors as a family. When asked about her involvement as the LGS Foundation board president Natalie responded, “My family and I be

Executive Director

Tracy Dixon-Salazar

Dr. Dixon-Salazar is a neuroscientist, geneticist, patient advocate, and Executive Director of the LGS Foundation. She did her Ph.D. and postdoctoral work at UC San Diego where she studied the mechanisms of brain development and synaptic plasticity, identified genetic causes of rare disorders in children, and researched precision therapeutics in stem cell and animal models of pediatric brain disease. Her desire to get her Ph.D. was inspired by her daughter who developed uncontrolled epilepsy at the age of 2, which then evolved into the rare disease Lennox-Gastaut Syndrome (LGS) by the age of 5. During her research tenure, and after 16 years of watching daily, unrelenting seizures in her child, she uncovered the genetic driver of her daughter’s illness and identified a novel precision therapy that improved her child's life. Dr. Dixon-Salazar has more than 20 years of non-profit leadership and advocacy experience where she emphasizes the importance of targeting both the causes and s

Number of employees

Source: IRS Form 990

Lennox-Gastaut Syndrome (LGS) Foundation

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

Lennox-Gastaut Syndrome (LGS) Foundation

Board of directors
as of 10/19/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board chair

Natalie Gilmore

President

Term: 2020 - 2023

Karen Groff

Dale Todd

Christopher Mitchell

Kevin Merritt

Melanie Huntley

Brittany Brown

Fred Roedl

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 10/19/2023

Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
Multi-Racial/Multi-Ethnic (2+ races/ethnicities)
Gender identity
Non-binary, Not transgender
Disability status
Person with a disability

Race & ethnicity

Gender identity

Transgender Identity

Sexual orientation

No data

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 10/19/2023

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • 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 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.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • 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 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.

Contractors

Fiscal year ending
There are no fundraisers recorded for this organization.