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Dravet Syndrome Foundation, Inc. Name provided directly to GuideStar from organization* as of: 05/06/2015: Dravet Syndrome Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 07/13/2015: DRAVET SYNDROME FOUNDATION INC

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AKA  Dravet Syndrome Foundation
West Haven, CT
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GuideStar Summary

&1002;      Updated Profile Committed to transparency ?
This is a Gold level GuideStar Nonprofit Profile, demonstrating this organization's commitment to transparency.

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2014, 2013, and 2012 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit and Charting Impact Report are available
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Basic Organization Information

Dravet Syndrome Foundation, Inc. Name provided directly to GuideStar from organization* as of: 05/06/2015: Dravet Syndrome Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 07/13/2015: DRAVET SYNDROME FOUNDATION INC

* GuideStar encourages organizations to regularly update information on their GuideStar Nonprofit Profiles. This provides richer and broader information about their programs, impact, finances, people and more.
Also Known As: Dravet Syndrome Foundation
Physical Address: West Haven, CT 06516 
EIN: 27-0924627
Web URL: www.dravetfoundation.org 
NTEE Category: H Medical Research
H12 Fund Raising and/or Fund Distribution
G Disease, Disorders, Medical Disciplines
G54 Epilepsy
Ruling Year: 2010 


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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.

Legitimacy Information

This organization is registered with the IRS.

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

Institutional funders should note that an organization’s inclusion on GuideStar.org does not satisfy IRS Rev. Proc. 2011-33 for identifying supporting organizations.

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Annual Revenue & Expenses

(GuideStar Nonprofit Profile,
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May 2015)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

Total Revenue $685,130
Total Expenses $517,830

Revenue & Expenses

(GuideStar Nonprofit Profile,
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May 2015)

Fiscal Year Starting: January 1, 2013
Fiscal Year Ending: December 31, 2013

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Balance Sheet (IRS Form 990)

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Forms 990 Received from the IRS Additional Information
IRS Form 990 is an annual document used by approximately one-third of all public charities to report information about their finances and operations to the federal government. GuideStar uses data from Form 990 to populate its database with financial information about nonprofit organizations. Posting Form 990 images on the GuideStar website is an ongoing process.

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Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership

(GuideStar Nonprofit Profile,
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May 2015)

Abby Hemani

Profile:

Ms. Hemani is a partner in Goodwin Procter's Litigation Department. Ms. Hemani focuses her practice on appellate matters, complex commercial litigation and government and internal investigations, with a particular focus on the financial services sector. She resides in Newton, MA, with her husband and their children, Jonah and Norah.

Leadership Statement:

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.

Board Chair (GuideStar Nonprofit Profile,
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May 2015)

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Board Co-Chair

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Board of Directors (GuideStar Nonprofit Profile,
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May 2015)

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Board Leadership Practices (GuideStar Nonprofit Profile,
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May 2015)

?

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.

Board Orientation & Education ?
Why does this matter? Without clarity around their responsibilities and expectations, board members are not positioned to succeed. They may find themselves challenged to fulfill their governance responsibilities or frustrated by the expectations that the organization has set for them. BoardSource recommends that every new board member participate in a formal orientation process, and that all board members sign a pledge or agreement committing to their board service and to all of the responsibilities and expectations that come with service. Ideally, board members also should participate in a formal governance training program prior to serving on a board.

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 ?
Why does this matter? Oversight and management of the chief executive is one of the board’s most important legal responsibilities. The CEO or executive director is the board's single employee, and - just like any other employer/employee relationship - regular and written assessment is critical to ensuring that the chief executive and board are communicating openly about goals and performance. BoardSource recommends that boards conduct formal, written reviews of their chief executives on an annual basis, which should include an in-person discussion with the chief executive and distribution of the written evaluation to the full board.

Has the board conducted a formal, written assessment of the chief executive within the past year?
Yes
Ethics & Transparency ?
Why does this matter? A commitment to handling conflicts of interests is essential to creating an organizational culture of transparency. Boards should create and follow a policy for identifying and handling conflicts of interest, whether real or perceived. BoardSource recommends that organizations review the conflict-of-interest statement and require signed disclosures from all board members and senior staff on an annual basis.

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements within the past year?
Yes
Board Composition ?
Why does this matter? The best boards are composed of individuals who bring a variety of skills, perspectives, backgrounds, and resources to tackle the complex and strategic challenges confronting their organizations. BoardSource recommends that boards commit to diversity and inclusion by establishing written policies and practices, which include strategic and intentional recruitment of diverse board members, continual commitment to inclusivity, and equal access to board leadership opportunities.

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?
Yes
Board Performance ?
Why does this matter? Boards need to regularly assess their own performance. Doing so ensures that they are being intentional about how they govern their organization, which is a critical component of effective board leadership. BoardSource recommends that a board conduct a self-assessment of its performance a minimum of once every three years to ensure that it is staying on track with its roles and responsibilities.

Has the board conducted a formal, written self-assessment of its performance within the past three years?
Yes

Officers for Fiscal Year (IRS Form 990)

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Highest Paid Employees & Their Compensation (IRS Form 990)

Highest Paid Employee data is not available for this organization.

Organizational Demographics (GuideStar Nonprofit Profile,
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May 2015)

?

This section is not a requirement for any of the GuideStar Nonprofit Profile participation levels - Bronze, Silver, or Gold. Instead, it 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).

Self-Identified Gender Identity of Board & Staff ?

Board Members Staff Members full time Staff Members part time Senior Staff full time Volunteers
Female 80% 100% 100% not collected not collected
Male 20% 0% 0% not collected not collected
Transgender?/Unspecified non-conforming 0% 0% 0% not collected not collected
Individuals decline to state 0% 0% 0% not collected not collected

Self-Identified Race/Ethnicity of Board & Staff

Board Members Staff Members full time Staff Members part time Senior Staff full time Volunteers
Asian/Asian American 0% 0% 0% not collected not collected
Black/African American 0% 0% 0% not collected not collected
Hispanic/Latino/Latina 0% 0% 0% not collected not collected
Native American/American Indian/Alaska Native/Native Hawaiian 0% 0% 0% not collected not collected
White 100% 100% 100% not collected not collected
Multi-racial or multi-ethnic (2+ races/ethnicities) 0% 0% 0% not collected not collected
Individuals decline to state 0% 0% 0% not collected not collected

Strategies to Address Diversity

‡We track retention of staff, board, and volunteers across demographic categories
‡We track income levels of staff, senior staff, and board across demographic categories

People information was last updated by the nonprofit in May 2015

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Programs

Program: DSF Research Grant Awards (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
Medical Research
Population Served:
Disabled, General or Disability Unspecified

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Since our inception in 2009, we have awarded over $625,000 in research grants.  We have co-funded two of these grants with C.U.R.E. (Citizens United for Research in Epilepsy) and are co-funding the International Ion Channel Epilepsy Patient Registry with ICE Epilepsy Alliance.

Program Success Monitored by:

The program success will be monitored by semi-annual reports submitted by the researchers on their progress.

Program Success Examples:

Program: Patient Assistance Grant Program (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
None
Population Served:
Physically Disabled nec
None
None

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

As of 2014, we awarded over $80,000 in grants to families for items including medical equipment, home modifications, seizure alarms, adaptive strollers, and closed-circuit cameras to monitor seizure activity at night.

Program Success Monitored by:

Overseen by Executive Director, Mary Anne Meskis

Program Success Examples:

The equipment awarded fulfills a medical, educational or safety need for the patient that makes their overall care easier for their families/caregivers.

Program: Annual Research Roundtable (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
Medical Research
Population Served:
Adults

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Several connections for future research collaborations were made at the inaugural meeting in December, 2010.

Program Success Monitored by:

Attendee feedback.

Program Success Examples:

Program: IICEPR (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
Medical Research
Population Served:
Children and Youth (infants - 19 years.)

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: Consider Dravet (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
Health Care
Population Served:
Adults

Program Description:

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

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

Program: DSF Biennial Family & Professional Conference (GuideStar Nonprofit Profile
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May 2015)

Budget:
--
Category:
Epilepsy
Population Served:
None
None
None

Program Description:

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.

Program Long-Term Success:

Program Short-Term Success:

Program Success Monitored by:

Program Success Examples:

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Impact Summary from the Nonprofit Additional Information
A Charting Impact Report consists of an organization’s responses to the five questions. Helping validate this self-reported data are three reviews. Once an organization has used the online interface to complete its report, its responses will produce a document with a unique URL that will be shared on this website, on your GuideStar profile, on the reports of charities participating in BBB Wise Giving Alliance evaluations, and – in the future – with other websites and information sources about nonprofits. We encourage organizations to use this URL to share their report on their own website and through their own media channels. Participants will receive guidance about promoting their Charting Impact Report, along with other benefits, once they publish their report.

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.
For more in-depth information about this organization's impact, view their Charting Impact Report.
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