Disease, Disorders, Medical Disciplines

LGS Foundation

aka Lennox-Gastaut Syndrome Foundation

Bohemia, NY

Mission

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

Ruling Year

2008

Executive Director

Ms. Christina SanInocencio

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)

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.

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Social Media

Programs + Results

What we aim to solve New!

Lennox-Gastaut Syndrome is a rare and severe form of childhood-onset epilepsy that typically persists into adulthood. The LGS Foundation is leading the charge to improve the lives of individuals who are living with this disorder, and their families, through research, programs, and education.

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

International Conference on Lennox-Gastaut Syndrome

Research Grant Program

Patient Assistance Program

Educational Materials

Epilepsy Genetics Initiative Pilot

Give Kids the World Partnership

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Total number of organization members

TOTALS BY YEAR
Population(s) served

People with disabilities

Context notes

The LGS Foundation's membership has increased by a minimum of 10% per year. This metric confirms that the LGSF continues to reach and engage those affected by LGS through outreach strategies.

Number of conference attendees

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

International Conference on Lennox-Gastaut Syndrome

Context notes

Attendance to the LGS Foundation's international conference has increased by apx. 30% for each meeting. This is due to the availability of family scholarships, increased advertising, and word of mouth

Total number of grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Research Grant Program

Context notes

The LGSF awards research grants to young and established investigators who are working hard to understand the syndrome and ultimately find a cure.

Number of patient assistance grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

Patient Assistance Program

Charting Impact

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

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

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. The LGS Foundation also spearheaded a genetic testing campaign in 2016 called LEEP (LGS/EGI Exome Project) which helps pay for whole exome sequencing for individuals with LGS in order to understand their genetic etiology. The LGSF is also involved in the Rare Epilepsy Network, the Pediatric Epilepsy Research Consortium (PERC), and a number of other committees that share similar research goals.

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.

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.

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 subcontracts a research director and executive director to lead the Foundation's mission.

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.

Accelerating Research: The LGS Foundation has funded hundreds of thousands of dollars in 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 4,000 unique individuals represented from over 28 countries. 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.

The LGS Foundation has accomplished the following over the past ten years:

Prior to November 29th, 2007, there had never been a formal organization for LGS. There were few places to turn for interpersonal support, and certainly no central foundation that brought LGS families together, provided resources, or funded research specifically in LGS.

LGSF SUPPORT:

By 2010, the LGSF had organized a number of regional support groups across the United States. This was one of our first big programs. The in-person family to family support was incredibly well received, as many of the families who attended were able to meet other families for the first time. Our most popular support tool is through facebook, where we have a closed group with 4,000 members around the world. The conversations and support in the group have been incredible over the years.

LGSF CONFERENCES:

In 2011, the LGSF held our first national conference on LGS in Arlington, VA. 70 families from across the United States traveled into the DC area for the first conference, which back then, was only two days long. Fast forward to 2017 when we hosted our first conference outside of the U.S. in the United Kingdom and our fifth international conference in Orlando, FL. This meeting brought together 325 LGS family members and epilepsy professionals.

RESEARCH:

In 2013, the LGSF launched our research grant program to help drive and accelerate research in LGS. In 2014, the LGSF helped launch the Rare Epilepsy Network (REN) in an effort to understand common issues across the rare epilepsies. This was a partnership with other rare epilepsy groups and the Epilepsy Foundation. In 2017, the LGSF launched the LEEP program (LGS / EGI Exome Project), which helps families receive free genetic testing, specifically whole exome sequencing, to understand the genetic causes behind their loved one's LGS. To date, we've enrolled more than a hundred families in REN, dozens of LGS families in LEEP and have funded a variety of basic science and clinical research grants in Lennox-Gastaut Syndrome. Grantees of our program have gone on to receive even larger grants from institutions like the NIH and those grantees have even gotten their colleagues interested in LGS research.

OTHER
Three other programs that the LGSF stewards are an international awareness day, a patient assistance program, and a wish granting mechanism to Give Kids the World. These programs have been called "life changing" by families in many different ways. Read all about them here: www.lgsfoundation.org/programs.

External Reviews

Financials

LGS Foundation

Fiscal year: Jan 01 - Dec 31

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Operations

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

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2016, 2015 and 2014
A Pro report is also available for this organization for $125.
Click here to 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