Medical Research

Dravet Syndrome Foundation, Inc.

  • West Haven, CT
  • www.dravetfoundation.org

Mission Statement

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.

Main Programs

  1. DSF Research Grant Awards
  2. Patient Assistance Grant Program
  3. Annual Research Roundtable
  4. IICEPR
  5. Consider Dravet
  6. DSF Biennial Family & Professional Conference

service areas

National

Self-reported by organization

ruling year

2010

chief executive

Nicole Villas

Self-reported by organization

co-chief executive

Abby Hemani

Self-reported by organization

Keywords

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

Self-reported by organization

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EIN

27-0924627

Also Known As

Dravet Syndrome Foundation

Contact

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.

Programs + Results

How does this organization make a difference?

Impact statement

By offering research grants for syndrome-specific research with a novel approach, we can help move researchers and the medical community forward to find better treatments and a cure for Dravet syndrome and related conditions.

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

DSF Research Grant Awards

The purpose of our Research Grant Program is to sponsor research directly related to Dravet syndrome and associated disorders.  Our research grants will fund initial research hypotheses that have not been fully explored.  The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental research funding.

Category

Medical Research

Budget

Population Served

Disabled, General or Disability Unspecified

Program 2

Patient Assistance Grant Program

This program offers grants to patients with Dravet syndrome and related epilepsies for necessary medical expenses associated with these conditions that are not covered through private insurance or other assistance programs.  Three percent of donations (after expenses) are allocated to this program.

Category

None

Budget

Population Served

Physically Disabled nec

None

None

Program 3

Annual Research Roundtable

This annual meeting allows researchers, geneticists, neurologists, clinicians and other professionals, with a strong interest in Dravet syndrome and related epilepsies, establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the DSF can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. This meeting takes place each year just prior to the commencement of the American Epilepsy Society (AES) Conference.

Category

Medical Research

Budget

Population Served

Adults

Program 4

IICEPR

The International Ion Channel Epilepsy Patient Registry is a collaborative effort between University of Michigan and Miami Children's Hospital which is being co-funded by the DSF and ICE Alliance.  This registry will collect basic patient data and genetic test results of individuals with Dravet syndrome and related ion channel epilepsies worldwide and will be available to all interested researchers.  www.iicepr.org
 
The establishment of this registry will expedite future clinical trials and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution on any new information that may benefit patients and their families.

Category

Medical Research

Budget

Population Served

Children and Youth (infants - 19 years.)

Program 5

Consider Dravet

This education and outreach program will instruct medical professionals on recognizing and diagnosing cases of Dravet syndrome in new and existing patients.

Category

Health Care

Budget

Population Served

Adults

Program 6

DSF Biennial Family & Professional Conference

The DSF Biennial Family & Professional Conference brings families together with leading clinicians and researchers to discuss new developments in Dravet syndrome and associated intractable childhood epilepsies. The event includes over a dozen topics, as well as parent-to-parent roundtables and opportunities for families to socialize. CME credits are available for professionals.

Category

Epilepsy

Budget

Population Served

None

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?
    Our primary goal is to accelerate research in Dravet syndrome and associated conditions, which we do through DSF funded research, 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. Our third goal is to educate the public and medical professionals to assure
    more patients are properly diagnosed and treated. Our fourth and final goal is to continue to build and strengthen our organization in order to achieve our mission.
  2. What are the organization's key strategies for making this happen?
    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.
  3. What are the organization's capabilities for doing this?
    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.
  4. How will they know if they are making progress?
    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.
  5. What have and haven't they accomplished so far?
    Since our inception in 2009, we have funded over $2.5M in Research Grant Awards and over $100,000 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 2016, we will host our 2nd biennial family & professional conference, bringing together the entire families with the professionals who have a strong interest in Dravet.

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

service areas

National

Self-reported by organization

Social Media

@https://www.facebook.com/DravetSyndromeFoundation

@https://twitter.com/curedravet

@DravetFoundation

@instagram.com/dravetsyndromefoundation/

photos



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Financials

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

DRAVET SYNDROME FOUNDATION INC
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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Operations

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

Dravet Syndrome Foundation, Inc.

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 2013
  • Board Chair, Board Co-Chair and Board Members
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CHIEF EXECUTIVE FOR FISCAL YEAR

Nicole Villas

co-chief executive

Abby Hemani

BIO

Ms. Villas is a former research chemist. She currently lives in Colorado with her husband and three boys. She enjoys hiking, skiing, and traveling with her family.

STATEMENT FROM THE CEO

"As an organization and as individuals, we value honesty, integrity, and accountability.  These principles help us measure the appropriateness of our decisions and allow us to make an impact in the field of Dravet syndrome and related ion channel epilepsies.  We are committed to the Dravet community and our partner organizations and have a passion for the work that we do through research funding and family advocacy."

Governance

BOARD CHAIR

Nicole Villas

No Affiliation

Term: Apr 2016 - Apr 2019

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

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Gender
Race & Ethnicity
Sexual Orientation

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