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LGS Foundation Organization Name provided in the GuideStar Exchange* as of 12/04/2013: LGS Foundation

Organization Name as listed in the IRS Business Master File as of 06/09/2014: LGS FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  Lennox-Gastaut Syndrome Foundation
New York, NY
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
This organization is a Bronze-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2012, 2011, and 2010 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

LGS Foundation Organization Name provided in the GuideStar Exchange* as of 12/04/2013: LGS Foundation

Organization Name as listed in the IRS Business Master File as of 06/09/2014: LGS FOUNDATION

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Lennox-Gastaut Syndrome Foundation
Physical Address: New York, NY 10150 
EIN: 26-2051377
Web URL: www.lgsfoundation.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G96 Neurology, Neuroscience
G Disease, Disorders, Medical Disciplines
G99 Diseases, Disorders, Medical Disciplines N.E.C.
G Disease, Disorders, Medical Disciplines
G54 Epilepsy
Ruling Year: 2008 
How This Organization Is Funded: Pharmaceutical - $60,000
Corporate Donors - $30,000
Private Donations - $25,000


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Mission Statement

The LGS Foundation is a nonprofit organization dedicated to providing information about Lennox-Gastaut syndrome, a rare and debilitating form of epilepsy, while raising funds for research, programs, and services for individuals living with LGS and their families.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
December 2013)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $120,000
Total Expenses $120,000

Revenue & Expenses (GuideStar Exchange,
The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.
December 2013)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

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Balance Sheet

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

Audited Financial Statement is not available for this organization.

Annual Reports

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Leadership (GuideStar Exchange,
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December 2013)

Ms. Christina SanInocencio

Leadership Statement:

It is my personal hope that one day Lennox-Gastaut syndrome will become a disorder of the past. But until then, the LGS Foundation will continue to help the hundreds of thousands of individuals across the world who suffer from this terrible disorder.

Board Chair (GuideStar Exchange,
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December 2013)

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Board Co-Chair

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Board of Directors (GuideStar Exchange,
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December 2013)

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Board Leadership Practices (GuideStar Exchange,
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December 2013)
?

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.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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?
Response Not Provided
CEO Oversight ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Response Not Provided
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Response Not Provided
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Response Not Provided
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Response Not Provided

Officers for Fiscal Year (IRS Form 990)

Officers information is not available for this organization.

Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

People information was last updated by the nonprofit in December 2013

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Programs

Program: LGS Support Groups (GuideStar Exchange,
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December 2013)

Budget:
$25,000
Category:
Epilepsy
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

The LGS Foundation organizes numerous support groups across the United States each year

Program Long-Term Success:

Support Groups across the United States are formed to provide support and information on LGS. Hundreds of LGS families have benefited from these groups by learning about new information related to LGS and meeting others affected. The growth of these groups has been four-fold over the last two years.

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: LGS Mentor Program (GuideStar Exchange,
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December 2013)

Budget:
$15,000
Category:
Human Services
Population Served:
General Public/Unspecified

Program Description:

The LGS Mentor program aims to train caregivers interested in educating the public about Lennox-Gastaut syndrome to help raise awareness, eliminate stigma, and provide information.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Art Therapy Program (GuideStar Exchange,
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December 2013)

Budget:
$15,000
Category:
Human Services
Population Served:
Disabled, General or Disability Unspecified

Program Description:

Art therapy is a mental health profession that uses the creative process of art making to improve and enhance the physical, mental and emotional well-being of individuals of all ages. It is believed to help the artist resolve problems, increase self awareness, express feelings and manage behavior. Art therapy is also believed to reduce stress, which can consequently lower seizure frequency in children and adults with epilepsy disorders.Vincent van Gogh, Lewis Carroll, and Michelangelo were all profound artists who lived with a form of epilepsy. It is believed that their disabilities may have played a role in their creative process.The LGS Foundation has developed an art therapy program for LGS patients by linking individuals with art therapists and/or providing art supplies and custom art therapy workbooks.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: LGS brochures and materials (GuideStar Exchange,
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December 2013)

Budget:
$10,000
Category:
Human Services
Population Served:
General Public/Unspecified

Program Description:

The LGS Foundation maintains accurate and up-to-date information on Lennox-Gastaut syndrome through brochures and other informational materials. These materials are distributed to the LGS Foundation's membership, at conferences and events, and to the general public.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: LGS National Conference (GuideStar Exchange,
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December 2013)

Budget:
$75,000
Category:
Epilepsy
Population Served:
Disabled, General or Disability Unspecified
None
None

Program Description:

The LGS Foundation holds an international conference every 18 months in the United States, bringing together hundreds of LGS families and epilepsy professionals to better understand the cause, treatments, and future directions of Lennox Gastaut Syndrome.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Research Program (GuideStar Exchange,
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December 2013)

Budget:
$50,000
Category:
Epilepsy
Population Served:
None
None
None

Program Description:

The LGS Foundation awards seed grants, targeted grants and travel grants to young investigators who are interested in studying Lennox Gastaut Syndrome.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit

Since our inception in 2008, thousands of individuals and their families have received support, information and other unique services from the LGS Foundation. Over a dozen new programs have been implemented which help improve quality of life, raise awareness, and fund research.
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Reviews

Organization Data Available

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