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Dravet Org

AKA  dravet.org
Afton, MN

GuideStar Summary

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&1002; Registered with IRS Legitimacy information is available
&1002; Financial Data Annual Revenue and Expense data reported
&1002; Forms 990 2011, 2010, and 2009 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 Org
Also Known As: dravet.org
Physical Address: Afton, MN 55001 
EIN: 20-4760085
Web URL: www.dravet.org 
NTEE Category: G Disease, Disorders, Medical Disciplines
G01 Alliance/Advocacy Organizations
G Disease, Disorders, Medical Disciplines
G54 Epilepsy
G Disease, Disorders, Medical Disciplines
G54 Epilepsy
Ruling Year: 2006 


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Mission Statement

The mission of dravet.org is to serve as the global patient advocate organization giving support to families, saving the lives of our children, promoting and funding medical research to find effective treatments and cures for Dravet syndrome and Dravet Spectrum Disorders.

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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Annual Revenue & Expenses (IRS Form 990, January 2011)

Fiscal Year Starting: January 01, 2011
Fiscal Year Ending: December 31, 2011

Total Revenue $135,985
Total Expenses $192,284

Revenue & Expenses

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Balance Sheet (IRS Form 990)

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Leadership (GuideStar Exchange,
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June 2014)

Joan Vogel Skluzacek

Leadership Statement:

Supporting the services of dravet.org is a small investment in comparison to the cost of unnecessary medical procedures.  A misdiagnosis can lead to the use of medications that are contraindicated for the Dravet spectrum which can increase seizures, further delay development, and may aggravate co-morbid conditions.    Through the education of patients and professionals we hope to guarantee access to early diagnosis and whole-child care.  Children with an early diagnosis have the opportunity to be placed on a proper protocol and engage in appropriate therapies to increase their chances for a better outcome.

Board Chair (GuideStar Exchange,
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June 2014)

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Board of Directors

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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 June 2014

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Programs

Program: (GuideStar Exchange,
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June 2014)

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Impact Summary from the Nonprofit

We are absolutely committed in our quest to find a cure while helping to improve the quality of life for patients and their families.  Our steadfast dedication to empower families so they can take an active role in their child’s care, while managing daily challenges of these disorders, is what motivates us to do more.

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Organization Data Available

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