Disease, Disorders, Medical Disciplines

LGS Foundation

  • Bohemia, NY
  • www.lgsfoundation.org

Mission Statement

The LGS Foundation is a nonprofit organization dedicated to improving the lives of individuals affected by Lennox-Gastaut Syndome through research, programs and support.

Main Programs

  1. LGS Support Groups
  2. LGS Mentor Program
  3. Art Therapy Program
  4. LGS brochures and materials
  5. International Conference on Lennox-Gastaut Syndrome
  6. Research Program

service areas

International

Self-reported by organization

ruling year

2008

chief executive

Ms. Christina SanInocencio

Self-reported by organization

Keywords

LGS, Lennox-Gastaut syndrome, Seizures, Epilepsy,

Self-reported by organization

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EIN

26-2051377

Physical Address

192 Lexington Ave Suite 209

New York, NY 10016

Also Known As

Lennox-Gastaut Syndrome Foundation

Contact

Cause Area (NTEE Code)

Neurology, Neuroscience (G96)

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Epilepsy (G54)

IRS Filing Requirement

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

Programs + Results

How does this organization make a difference?

Impact statement

The LGS Foundation's programs, particularly our International Family & Professional Conference, our patient assistance program, and our research grant program fulfill our mission of improving the lives of individuals with LGS through research, programs and education.

Programs

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

Self-reported by organization

Program 1

LGS Support Groups

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

Category

Epilepsy

Budget

$25,000.00

Population Served

Disabled, General or Disability Unspecified

None

None

Program 2

LGS Mentor Program

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.

Category

Human Services

Budget

$15,000.00

Population Served

General Public/Unspecified

Program 3

Art Therapy Program

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.

Category

Human Services

Budget

$15,000.00

Population Served

Disabled, General or Disability Unspecified

Program 4

LGS brochures and materials

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.

Category

Human Services

Budget

$10,000.00

Population Served

General Public/Unspecified

Program 5

International Conference on Lennox-Gastaut Syndrome

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.

Category

Epilepsy

Budget

$75,000.00

Population Served

Disabled, General or Disability Unspecified

None

None

Program 6

Research Program

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

Category

Epilepsy

Budget

$75,000.00

Population Served

Disabled, General or Disability Unspecified

None

None

Charting Impact

Five powerful questions that require reflection about what really matters - results.

Self-reported by organization

  1. What is the organization aiming to accomplish?
    The LGS Foundation's goals include: accelerating research, strengthening programs that benefit LGS families, and educating and empowering the LGS community.

    Accelerating research: The LGSF offers seed grants and post-doctoral fellowships to investigators who are interested in studying Lennox-Gastaut Syndrome. The LGSF strategic research plan outlines five targeted areas of research: 1. Promoting Phenotyping and Genotyping Studies 2. Better Data Collection and Epidemiology 3. Better Treatments 4. Improving Quality of Life 5. Understanding the Cause. The LGS Foundation is an active participant in the Rare Epilepsies Network.

    Strengthening Programs: The LGSF has developed a number of programs that directly impact the lives of individuals living with LGS and their families. These include: an international conference on Lennox-Gastaut Syndrome, held every 18 months in the United States; regional support groups; partnership with Give Kids the World; a patient assistance program; online support groups; and an ambassador program.

    Educating and Empowering the LGS Community: The LGSF educates our constituents through conferences, support groups, social media, and a variety of educational tools that continue to be an important and successful return on investment. Families are more empowered through LGSF-organized initiatives such as International LGS Awareness Day, Rare Disease activities, and other events.
  2. What are the organization's key strategies for making this happen?
    Promote participation in Rare Epilepsies Network and enrollment in genetics studies to help identify underlying causes of LGS; encourage young investigators to study LGS by supporting them in their career by way of post-doctoral research grants and seed grants. Continue to collaborate with industry and researchers to make clinical trials successful, and therefore, more treatments available to individuals affected by LGS.

    Strengthen Programs: Grow conference attendance by 20% every 18 month cycle; expand outreach to families who have a child with LGS; continue to connect affected individuals for support purposes through online platforms and mentor program; develop new resources for families

    Educating and Empowering the LGS Community: Provide tangible information to community that helps educate others about LGS; continue to execute IOM recommendations from 2012 Report on the Epilepsies; help families understand the importance of participating in research; encourage families to get involved in rare disease initiatives and to raise awareness in their communities.
  3. What are the organization's capabilities for doing this?
    The LGS Foundation is comprised of a diverse board of directors, all whom lend invaluable skills to help further the LGSF mission. In addition to a parent-led BOD, the LGS Foundation seeks counsel from a professional advisory board whom are experts in the field of epilepsy. The LGSF strategic research committee (SRC) helps guide the foundation's research efforts and is led by the Executive Director, an epidemiologist, and a computational biologist, all whom have a loved one affected by LGS.

    The LGS Foundation has been recognized as a leading organization in the epilepsy community and has won a number of advocacy awards over the past five years. The LGSF is currently, or has previously been involved in: the Epilepsy Leadership Council (formerly Vision 20/20), the Institute of Medicine Report on the Epilepsies (2012), Human Epilepsy Research Opportunities, rare epilepsies programs (such as the Rare Epilepsy Network and various professional / family initiatives), Rare Disease Day, National Institutes of Health, American Epilepsy Society, and others.
  4. How will they know if they are making progress?
    Accelerating Research: The LGS Foundation has funded a handful of research grants that aim to better understand treatments for individuals with LGS, most recently, a zebrafish model and a study on the efficacy of the Low Glycemic Index Treatment for LGS. The LGS Foundation continues to encourage participation from our members in both the Rare Epilepsies Network, and is leading the enrollment to date. In late 2014, the LGSF officially launched our strategic research plan at the American Epilepsy Society meeting.

    Strengthen Programs: The LGS Foundation has more than 3,000 unique individuals with represented from over 28 countries. During our last international conference on Lennox-Gastaut Syndrome, families from four continents were represented and traveled to Columbus, Ohio. To date, hundreds of LGS families have directly benefited from attending the LGSF conference, in-person support groups, Give Kids the World partnership, and general information / education from our website and educational materials.

    Educating and Empowering Families: Through participation in programs and events, particularly the LGS Conference, families are becoming increasingly more health literate and more empowered to seek better treatment for their children. The LGS Foundation has changed lives through education and empowerment.
  5. What have and haven't they accomplished so far?
    Expansion of LGS Professional Advisory Board will be taking place in 2015 - 2016 to a board of 10-12.

    The LGS Foundation has assisted in the formation of two international organizations dedicated to Lennox-Gastaut Syndrome. These partners include organizations in Mexico City and Italy.

service areas

International

Self-reported by organization

Funding Needs

General operating support, funding for various programs (in addition to those listed).

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

LGS FOUNDATION INC
Fiscal year: Jan 01-Dec 31

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Operations

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

LGS Foundation

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

CHIEF EXECUTIVE FOR FISCAL YEAR

Ms. Christina SanInocencio

Governance

BOARD CHAIR

Christina SanInocencio

President

Term: 2008 -

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. Self-reported by organization

Yes

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?