Disease, Disorders, Medical Disciplines

LGS Foundation

Bohemia, NY

Mission

The LGS Foundation's mission is to improve the lives of individuals affected by Lennox-Gastaut Syndrome (LGS) through research, family support programs, and education.

Ruling Year

2008

Board President of LGS Foundation

Mrs Natalie Gilmore

Main Address

80 Orville Dr Suite 100

Bohemia, NY 11716 USA

Keywords

LGS, Lennox-Gastaut syndrome, Seizures, Epilepsy,

EIN

26-2051377

 Number

5500936211

Cause Area (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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Social Media

Blog

Programs + Results

What we aim to solve

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Our programs

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

SOURCE: Self-reported by organization

Patient Assistance Program

Family Ambassador Program

Give Kids the World & LGS Foundation

Where we work

How We Listen

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

Source: Self-reported by organization

the feedback loop
check_box We shared information about our current feedback practices.
How is the organization collecting feedback?
We regularly collect feedback through: electronic surveys (by email, tablet, etc.), ambassador program.
How is the organization using feedback?
We use feedback to: to inform the development of new programs/projects, to strengthen relationships with the people we serve.
With whom is the organization sharing feedback?
We share feedback with: the people we serve, our staff, our board, our funders, our community partners.
What challenges does the organization face when collecting feedback?
It is difficult to: we don't have any major challenges to collecting feedback.
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

External Reviews

Financials

LGS Foundation

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
  • A Pro report is also available for this organization.

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Operations

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

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FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
  • A Pro report is also available for this organization.

See what's included

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & 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 & 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

In order to support nonprofits and gain valuable insight for the sector, GuideStar worked with D5—a five-year initiative to advance diversity, equity, and inclusion in philanthropy—in creating a questionnaire. This section is a voluntary questionnaire that empowers organizations to share information on the demographics of who works in and leads organizations. To protect the identity of individuals, we do not display sexual orientation or disability information for organizations with fewer than 15 staff. Any values displayed in this section are percentages of the total number of individuals in each category (e.g. 20% of all Board members for X organization are female).

SOURCE: Self-reported by organization

Gender

Race & Ethnicity

Sexual Orientation

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

Disability

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

Diversity Strategies

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We track retention of staff, board, and volunteers across demographic categories
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We track income levels of staff, senior staff, and board across demographic categories
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We track the age of staff, senior staff, and board
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We track the diversity of vendors (e.g., consultants, professional service firms)
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We have a diversity committee in place
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We have a diversity manager in place
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We have a diversity plan
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We use other methods to support diversity