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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 ?
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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,
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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,
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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 of Directors (GuideStar Exchange,
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December 2013)

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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.

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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.

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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.

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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.

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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.

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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.

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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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