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Dravet Syndrome Foundation, Inc. Organization Name provided in the GuideStar Exchange* as of 08/09/2014: Dravet Syndrome Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: DRAVET SYNDROME FOUNDATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It provides richer and broader information about their programs, impact, finances, people and more.

AKA  Dravet Syndrome Foundation
West Haven, CT
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GuideStar Summary

&1002;                GuideStar Exchange Committed to transparency ?
This organization is a Silver-level GuideStar Exchange participant, demonstrating its 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 2013, 2012, and 2011 Forms 990 filed with the IRS
&1002; Mission Objectives Mission Statement is available
&1002; Impact Summary Impact Summary from the nonprofit is available
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Basic Organization Information

Dravet Syndrome Foundation, Inc. Organization Name provided in the GuideStar Exchange* as of 08/09/2014: Dravet Syndrome Foundation, Inc.

Organization Name as listed in the IRS Business Master File as of 09/08/2014: DRAVET SYNDROME FOUNDATION INC

* The GuideStar Exchange allows nonprofits to regularly update key information directly to GuideStar. It 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 Exchange,
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August 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $469,459
Total Expenses $476,836

Revenue & Expenses (GuideStar Exchange,
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August 2014)

Fiscal Year Starting: January 1, 2011
Fiscal Year Ending: December 31, 2011

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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 Exchange,
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August 2014)

Lori O'Driscoll

Term:

Since Sept 2009

Profile:

Ms. O'Driscoll has fundraising experience and previous nonprofit management experience from serving on the working board of another nonprofit from August 2008 through October 2009.  Her work with this organization included chairing the fundraising committee as well as overseeing their two major events, an annual gala and an annual walk.    She has a BA in English and an MA in Elementary Education.  She has worked as a Production Stage Manager for Long Wharf Theater, Blue Man Group, LaJolla Playhouse and Pittsburgh Public Theatre.

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 Exchange,
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August 2014)

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Board Co-Chair (GuideStar Exchange,
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August 2014)

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Board of Directors (GuideStar Exchange,
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August 2014)

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Board Leadership Practices (GuideStar Exchange,
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August 2014)
?

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?
Response Not Provided
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?
Response Not Provided
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?
Response Not Provided
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?
Response Not Provided
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?
Response Not Provided

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.

People information was last updated by the nonprofit in August 2014

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Programs

Program: DSF Research Grant Awards (GuideStar Exchange,
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August 2014)

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: International Patient Assistance Grant Program (GuideStar Exchange,
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August 2014)

Budget:
--
Category:
Health Care
Population Served:
Physically Disabled nec

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:

In our first grant cycle at the end of 2010, we awarded over $10,000 in grant to families for items including home modifications, seizure alarms, adaptive strollers, and closed-circuit cameras to monitor seizure activity at night.

Program Success Monitored by:

Overseen by Vice-President of the Board, Mary Anne Meskis

Program Success Examples:

The equipment awarded fulfills a need for the patient that makes their overall caretaking easier for both themselves and their families.

Program: Annual Research Roundtable (GuideStar Exchange,
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August 2014)

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 Exchange,
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August 2014)

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 Exchange,
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August 2014)

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 Exchange,
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August 2014)

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

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.
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