Medical Research

Dravet Syndrome Foundation, Inc.

Raising hope & changing lives through research

aka Dravet Syndrome Foundation

Cherry Hill, NJ

Mission

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise research funds for Dravet syndrome and related epilepsies; to increase awareness of these catastrophic conditions; and to provide support to affected individuals and families.

Ruling Year

2010

Executive Director

Mary Anne Meskis

Board President

Nicole Villas

Main Address

PO Box 3026

Cherry Hill, NJ 08034 USA

Keywords

Dravet syndrome, SMEI, GEFS+, Dravet's, SMEB

EIN

27-0924627

 Number

4193880653

Cause Area (NTEE Code)

Fund Raising and/or Fund Distribution (H12)

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!

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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

DSF Research Grant Awards

Patient Assistance Grant Program

Annual Research Roundtable

IICEPR

FInd a Doctor

DSF Biennial Family & Professional Conference

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 dollar amount of grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

DSF Research Grant Awards

Total number of grants awarded

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

DSF Research Grant Awards

Number of conference attendees

TOTALS BY YEAR
Population(s) served

Caregivers,

Families,

People with diseases and illnesses

Related program

DSF Biennial Family & Professional Conference

Context notes

A little more than a 30% increase in attendees, allowed us the opportunity to educate even more families and professionals on the latest in research and treatment options for Dravet syndrome.

Number of organizations applying for grants

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

DSF Research Grant Awards

Median grant amount

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

DSF Research Grant Awards

Context notes

Median grant amount is for a 2-year research project. Our postdoctoral fellowships offer $50,000 for a 1-year grant.

Average grant amount

TOTALS BY YEAR
Population(s) served

No target populations selected

Related program

DSF Research Grant Awards

Context notes

Median grant amount is for a 2-year research project. Our postdoctoral fellowships offer $50,000 for a 1-year grant.

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?

Our primary goal is to accelerate research in Dravet syndrome and associated intractable pediatric epilepsies, which we do through our research program, our patient registry and collaborations within the medical community.

Our second goal is to support and empower our patient and caregiver community through advocacy and education. We do this through our patient assistance grant program, family support group, website resources and our biennial Family and Professional Conference.

Our third goal is to educate the public and medical professionals to assure
more patients are properly diagnosed and treated. We do this through our Consider Dravet professional education program and our biennial Family and Professional Conference.

Our fourth and final goal is to continue to build and strengthen our organization in order to achieve our mission. We work towards this goal by expanding and adding to our program offerings, as well as by increasing our fundraising and awareness efforts.

We have seven core programs that we utilize to accomplish our mission: DSF Research Grant Award Program; DSF Patient Assistance Grant Program; International Ion Channel Patient Registry (IICEPR); DSF Research Roundtable; DSF Biennial Family & Professional Conference; and Patient Advocacy.

Our board of directors and staff are made up of a dedicated and diverse group of experienced professionals with non-profit, legal, educational and health experience. We have a Scientific Advisory Board (SAB) made up of the top researchers in the field, as well as a Medical Advisory Board (MAB) made up of top clinicians with experience in treating Dravet syndrome. Our SAB & MAB assist us by promoting DSF and its programs within the medical community.

We continue to enhance and grow our patient community support through our caregiver support group and a variety of informational resources for caregivers and families. We are working with our Medical Advisory Board (MAB) to establish a consensus on treatments and best standards of care that will dramatically improve quality of life, medical care and long-term survival. Through our "Consider Dravet" campaign, we offer professional outreach and education.

We offer access to the latest updates in Dravet syndrome through our social media accounts, e-newsletter, parent support group, biennial family conferences and our annual research roundtable.

We aim to fund a minimum of $500,000 per year through our Research Grants and Postdoctoral Fellowship Opportunities. Through our annual Research Roundtable meeting and our Consider Dravet campaign, we will continue to expand our outreach to researchers and medical professionals.

To support our patient community, we continue to enroll participants in our patient registry; host our biennial family and professional conference on even-numbered years at varying locations across the United States; and continue to update and provide appropriate materials to caregivers and professionals.

We continue to grow and retain our donor base, and continue to identify and recruit a variety of volunteers, professional advisers and in-kind opportunities. We will continue our social media outreach on available platforms that bring value to the organization.

Since our inception in 2009, we have funded over $3.3M in Research Grant Awards and over $120,000 in Patient Assistance Grants. We have hosted seven DSF Research Roundtables where we bring professionals with an interest in Dravet syndrome together to discuss current treatments and progress in the field. We have also established a Scientific Advisory Board and Medical Advisory Board.

We have an active social media following and offer a private caregiver support group where families can connect with one another. In June 2016, we hosted our 2nd biennial family & professional conference, bringing together the entire families with the professionals who have a strong interest in Dravet syndrome. Our 3rd conference will take place in July 2017 in association with Children's Hospital of Colorado.

We will continue with our current programs, while looking for additional unfilled niches within our community that need to be served.

External Reviews

Photos

Financials

Dravet Syndrome Foundation, Inc.

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?

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  • Forms 990 for 2017, 2016 and 2016
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

This organization reports that it does not collect this information for Board Members.

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