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About DSF

Raising Hope & Changing Lives Through Research

About DSF

When a group of parents started the Dravet Syndrome Foundation in 2009, there were no treatments specifically for Dravet syndrome. These parents set their sights high — to advance understanding of this little-known disease, to create new treatments and specialized care for their children, and to find a cure.

In the ensuing years, the fundraising and commitment of the Dravet syndrome community has enabled DSF to support fundamental research in the laboratory that has led to groundbreaking discoveries. By expanding our knowledge of the underlying biology of the disease, researchers have paved the way for creating new treatments.

DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine).

Our Mission

The mission of Dravet Syndrome Foundation (DSF) is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families.

We understand:

  • The ongoing need to fund innovative research.
  • The urgency in finding better treatments.
  • The motivation of our donors to make an impact specifically in the fields of Dravet syndrome and related epilepsies.
  • The importance of transparency and accountability of not only our organization, but the researchers that we fund.
  • The need for global collaboration in order to find a cure.

Our Strategic Plan

The content for our 5 Year strategic plan was derived by examining the Dravet syndrome landscape and listening to a broad range of of input from key stakeholders within our community regarding current community priorities, emerging needs, and organizational strengths and vulnerabilities.

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Staff Members
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Board Members
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Advisory Board Members
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Family Network Ambassadors

Our History

Dravet Syndrome Foundation was founded by a group of parents with the purpose of expediting research to find a cure and better treatments for their afflicted children. It was established in the state of Connecticut in October 2009. DSF is registered as a tax-exempt public charity by the Internal Revenue Service under Section 501(c)(3).

Corporate Relations

In all relations with external organizations, DSF will act in ways that enhance our credibility and professional recognition. In order to ensure that all corporate donations are in alignment with our mission and are for the benefit of the Dravet community, DSF follows the following guidelines and principles.

Donation Guidelines

In addition to our internal financial management controls to assure ethical leadership, DSF has established donation policy for pharmaceutical companies, sponsors and private donors. These guidelines serve as guidance for our board members, staff and volunteers to guarantee there is no real or perceived bias.

Transparency

DSF realizes the significance of financial transparency to our supporters. We pride ourselves on maintaining operating expenses at a minimum to ensure that the generous gift of every donor truly brings us one step closer towards a cure.

Dravet Syndrome Foundation recognizes that by opening lines of communication, connecting scientists, and forming partnerships with doctors, researchers, and patient organizations, we can assure rapid distribution of information and avoid duplication of efforts. DSF chooses to partner with like-minded organizations who share our priorities of finding better treatments and a cure, and who share our integrity and values. Through these meaningful collaborations we can have a much greater impact than working alone. DSF welcomes partnerships with other organizations who wish to contribute and participate in projects that are in-line with their mission and which appeal to their supporters. The quickest way to a cure for a rare disease such as Dravet syndrome is through global collaboration.

Advocacy organizations, medical partners, industry or other parties interested in partnering with DSF should email Mary Anne.

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