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Dravet Syndrome Foundation, Inc.

AKA Dravet Syndrome Foundation

Monroe, CT

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Dravet Syndrome Foundation, Inc.

Also Known As:
Dravet Syndrome Foundation
Physical Address:
Monroe, CT 06468 
EIN:
27-0924627
Web URL:
www.dravetfoundation.org
Leadership:
Lori O'Driscoll
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Legitimacy Information

  • This organization is registered with the IRS.
  • This organization is required to file an IRS Form 990 or 990-EZ.

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Forms 990 from 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 Web site is an ongoing process.

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Fiscal Year Starting: Jan 1, 2011
Fiscal Year Ending: Dec 31, 2011
Revenue
Total Revenue $469,459
Expenses
Total Expenses $476,836

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Financial data from Forms 990 for Year 2012, 2011, 2010 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.



GuideStar Exchange Member

This organization is a Silver-level GuideStar Exchange participant, demonstrating its commitment to transparency.

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Basic Organization Information

Dravet Syndrome Foundation, Inc.

Also Known As:
Dravet Syndrome Foundation
Physical Address:
Monroe, CT 06468 
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.

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.

Financial Data

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Revenue and Expenses

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Revenue and Expense data from Forms 990 for 2012, 2011, 2010 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart


Balance Sheet

Balance Sheet data from Forms 990 for Year 2012, 2011, 2010 are included in the GuideStar Premium Report. Upgrade Now Report Added To Cart

A multi-year analysis of key balance sheet, income statement, profitability and liquidity measures is available for this organization. Financial SCAN includes a detailed financial health analysis and peer comparison and benchmarking tool. Learn More

Financial SCAN

Financial SCAN

Key Financial SCAN Features

  • Financial Health Dashboard: Highlights key financial trends and ratios for a selected nonprofit organization over a period of up to five years.
  • Peer Comparison Dashboard: Compares the organization's financials with up to five peer nonprofits that you select.
  • Graphical Analysis: Provides multi-year graphs and an interpretive guide in a format ready to present to your clients.
  • Printable PDF Report: Provides a complete analysis of the organization for your records. The full report tells you what to look for and why it matters.
  • Advanced Search: Allows you to search by EIN (Employer Identification Number), organization name, city, state, revenue, expenses, and assets.


Forms 990 Provided by the Nonprofit

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Financial Statements

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Annual Reports

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Leadership (GuideStar ExchangeThe 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. February, 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.



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.


Program: DSF Research Grant Awards

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

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

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

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

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

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:


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.

Organization Data Available

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  • Forms 990T for
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  • Annual Reports for
  • Letter of Determination
  • Form 1023 / 1024
  • Board Members
  • Officer, Director and/or Highest Paid Employee data for


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