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. International Conference on Lennox-Gastaut Syndrome
  2. Research Grant Program
  3. Patient Assistance Program
  4. Educational Materials
  5. Epilepsy Genetics Initiative Pilot
  6. Give Kids the World Partnership
Service Areas

Self-reported

International

International

ruling year

2008

Executive Director since 2010

Self-reported

Ms. Christina SanInocencio

Keywords

Self-reported

LGS, Lennox-Gastaut syndrome, Seizures, Epilepsy,

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EIN

26-2051377

 Number

5500936211

Physical Address

80 Orville Dr Suite 100

Bohemia, NY 11716

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?

Overview

Self-reported by organization

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

Self-reported by organization

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

Program 1

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

Population(s) Served

Disabled, General or Disability Unspecified

None

Budget

85,000

Program 2

Research Grant Program

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

Category

Population(s) Served

Disabled, General or Disability Unspecified

None

Budget

75,000

Program 3

Patient Assistance Program

The LGS Foundation offers a patient assistance program to families of individuals with Lennox-Gastaut Syndrome to help them afford for medical goods and devices not typically covered by insurance. The yearly maximum grant per family is $1,000 with a lifetime maximum of $5,000.00

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Disabled, General or Disability Unspecified

Budget

10,000

Program 4

Educational Materials

The LGS Foundation offers free, comprehensive educational materials mailed to our constituents in the United States and Canada. International members may download these items free of charge through our website. The LGSF's educational materials are also distributed at annual scientific and medical conferences.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Disabled, General or Disability Unspecified

Budget

5,000

Program 5

Epilepsy Genetics Initiative Pilot

The LGS Foundation is partnering with CURE (Citizens United for Research in Epilepsy) for a new pilot program that will enable dozens of individuals with Lennox-Gastaut Syndrome to receive whole exome sequencing.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Disabled, General or Disability Unspecified

Budget

30,000

Program 6

Give Kids the World Partnership

The LGS Foundation awards two all-expense paid wish trips to Give Kids the World resort in Kissimmee, FL. Give Kids the World is s a 79-acre, non-profit storybook resort located near Central Florida's most beloved attractions where children with life-threatening illnesses are treated to a cost-free vacation with their families. The resort's focus is providing accommodations and access to donated theme park tickets.

Category

Population(s) Served

Budget

5,000

Results

Self-reported by organization

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.

1. Total number of organization members

Target Population
People with disabilities

Connected to a Program?
n/a
TOTALS BY YEAR
Context notes for this metric
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.

2. Number of conference attendees

Target Population
No target populations selected

Connected to a Program?
International Conference on Lennox-Gastaut Syndrome
TOTALS BY YEAR
Context notes for this metric
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

Charting Impact

Self-reported by organization

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

  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

Self-reported

International

International

Social Media

Funding Needs

The LGS Foundation's important work of improving the lives of individuals with Lennox-Gastaut Syndrome through research, programs, and education requires raising funds from our community. Our research grant program, for example, provides seed grants and post-doctoral fellowships in the amount of $30,000 to $50,000 to investigators who are dedicated to advancing research in the disorder. These researchers are studying the causes behind LGS and ways to develop better treatments, with the ultimate goal of finding a cure for LGS. The LGS Foundation is able to fund these important research projects through donations from our community and corporate partners. Another vital program of the LGS Foundation that requires funding is the LGSF's International Conference on Lennox-Gastaut Syndrome, which is held every 18 months within the USA. Funds raised through this program offset the costs of the meeting, helping to make it more affordable (or free) to LGS families. The LGS Foundation conference has been described as "life changing" and "empowering" by more than 500 attendees throughout the world. Other programs, such as our patient assistance program and our partnership with Give Kids the World, are important assistance programs that make a deep impact on the lives of LGS families.

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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

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  • Address, phone, website and contact information
  • Forms 990 for 2014, 2013 and 2012
  • Board Chair and Board Members
  • Access to the GuideStar Community
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Executive Director

Ms. Christina SanInocencio

Governance

BOARD CHAIR

Melanie Huntley PhD

President

Term: Apr 2016 -

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?


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).

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
No
We track retention of staff, board, and volunteers across demographic categories
No
We track income levels of staff, senior staff, and board across demographic categories
No
We track the age of staff, senior staff, and board
No
We track the diversity of vendors (e.g., consultants, professional service firms)
No
We have a diversity committee in place
No
We have a diversity manager in place
No
We have a diversity plan
No
We use other methods to support diversity