PLATINUM2022

Lennox-Gastaut Syndrome (LGS) Foundation

LGS is tough. So are we.

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

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

NTEE code info

Neurology, Neuroscience (G96)

IRS filing requirement

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

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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

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

Increasing

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 collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Paper surveys, Focus groups or interviews (by phone or in person), Case management notes, Community meetings/Town halls, Ambassador Program,

  • 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,

  • What significant change resulted from feedback?

    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

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • 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
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Operations

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

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Connect with nonprofit leaders

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lock

Connect with nonprofit leaders

Subscribe

Build relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.

  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Lennox-Gastaut Syndrome (LGS) Foundation

Board of directors
as of 07/25/2022
SOURCE: Self-reported by organization
Board chair

Natalie Gilmore

President

Term: 2020 - 2023

Karen Groff

Dale Todd

Christopher Mitchell

Kevin Merritt

Melanie Huntley

Brittany Brown

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 7/25/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
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 (cisgender)
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 07/25/2022

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.