Lennox-Gastaut Syndrome (LGS) Foundation
LGS is tough. So are we.
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
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
EIN
26-2051377
NTEE code
Neurology, Neuroscience (G96)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
We seek to end the devastation and suffering caused by Lennox-Gastaut Syndrome (LGS).
Our programs
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.
Patient Navigator and Family Ambassador Program
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.
Research Grants Program
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.
Where we work
External reviews
Our results
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
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
See Our Impact here:
https://www.lgsfoundation.org/our-impact/
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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,
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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,
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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
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With whom is the organization sharing feedback?
The people we serve, Our staff, Our board, Our funders, Our community partners,
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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,
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback,
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild 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 directorsas of 07/25/2022
Natalie Gilmore
President
Term: 2020 - 2023
Karen Groff
Dale Todd
Christopher Mitchell
Kevin Merritt
Melanie Huntley
Brittany Brown
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
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:
The organization's co-leader identifies as:
Race & ethnicity
No data
Gender identity
Sexual orientation
No data
Disability
We do not display disability information for organizations with fewer than 15 staff.
Equity strategies
Last updated: 07/25/2022GuideStar 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
- 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.
- 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.
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