Disease, Disorders, Medical Disciplines

Dravet Org

  • Afton, MN
  • www.dravet.org

This organization has not appeared on the IRS Business Master File in a number of months. It may have merged with another organization or ceased operations.


This organization's exempt status was automatically revoked by the IRS for failure to file a Form 990, 990-EZ, 990-N, or 990-PF for 3 consecutive years. Further investigation and due diligence are warranted.

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.

service areas

International

Self-reported by organization

ruling year

2006

chief executive

Joan Vogel Skluzacek

Self-reported by organization

Keywords

Epilepsy, Febrile Seizures, Dravet syndrome, SMEI, severe myoclonic epilepsy of infancy, SMEB, sodium channelopathies, intractable childhood epilepsy,ion channel epilepsy, Generalized Epilepsy with Febrile Seizures (+), Severe Infantile Mulitfocal Epilepsy, Genetic epilepsy, Intractable Childhood Epilepsy with Generalized Tonic Clonic Seizures

Self-reported by organization

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EIN

20-4760085

Physical Address

3100 Perrot Ave. S. c/o Joan Skluzacek

Afton, 55001

Also Known As

dravet.org

Contact

Cause Area (NTEE Code)

Alliance/Advocacy Organizations (G01)

Epilepsy (G54)

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

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.

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

Not available

Category

Budget

Population Served

service areas

International

Self-reported by organization

photos



External Reviews

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Financials

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

DRAVET.ORG FORMERLY THE IDEA LEAGUE
Fiscal year: Jan 01-Dec 31
Yes, financials were audited by an independent accountant.

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  • Address, phone, website and contact information
  • Forms 990 for 2011, 2011 and 2010
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
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Operations

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

Dravet Org

Leadership

NEED MORE INFO ON THIS NONPROFIT?

Free: Gain immediate access to the following:
  • Address, phone, website and contact information
  • Forms 990 for 2011, 2011 and 2010
  • Board Chair and Board Members
  • Access to the GuideStar Knowledge Base Search
Need the ability to download nonprofit data and more advanced search options? Consider a Premium or Pro Search subscription.

CHIEF EXECUTIVE FOR FISCAL YEAR

Joan Vogel Skluzacek

STATEMENT FROM THE CEO

"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."

Governance

BOARD CHAIR

Laura Cossolotto

No Affiliation

Term: Aug 2008 - Aug 2010

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


RESPONSE NOT PROVIDED

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?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

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