Overview
What is Dravet Syndrome Foundation Inc?
The Dravet Syndrome Foundation Inc, situated in Cherry Hill, New Jersey, serves as a dedicated nonprofit organization that is committed to combating Dravet syndrome and related epilepsies. Their primary mission is to raise funds, support research, increase awareness, and offer assistance to affected individuals and families. Since its inception, they have awarded over $6.4 million to 56 research projects, focusing on various areas such as SUDEP, gene therapy, drug discovery, and genetics. In 2020, the foundation hired a Scientific Director to strengthen their involvement in research projects and facilitate collaboration with other institutions like the NIH, PDA, and pharmaceutical companies. With a staff of seven individuals, the Dravet Syndrome Foundation Inc remains an active force in the pursuit of better treatments and a potential cure for Dravet syndrome and related epilepsies.
Official website here: www.dravetfoundation.org
What are the reviews and ratings of this charity?
Charity Navigator Rating: 99% - Four-Star out of Four Stars
The Dravet Syndrome Foundation, Inc. (DSF) has earned a high rating of 99% from Charity Navigator, reflecting its strong accountability and financial practices. The organization boasts a 100% score in accountability and finance with an impressive program expense ratio of 77.48%, indicating a substantial portion of funds directed towards its mission. The foundation's commitment to transparency is further supported by its independent board and adherence to conflict of interest and whistleblower policies.
User reviews are overwhelmingly positive, with families expressing gratitude for the support and resources provided by DSF. Many testimonials highlight how the foundation has significantly impacted their quality of life, offering essential grants for medical equipment and enabling families to connect with one another for emotional support. Their advocacy for research and new treatment options is praised as a lifeline for families navigating the challenges of Dravet Syndrome.
However, despite its strengths, some reviews point to the potential need for broader outreach to ensure that all families affected by Dravet Syndrome are aware of the resources available. Overall, DSF is seen as an essential resource for education, support, and advocacy within the Dravet community, making a meaningful difference in the lives of those it serves.
This AI summary has been generated from information found on Charity Navigator and Great Nonprofits.
What do the Facebook reviews say about Dravet Syndrome Foundation Inc?
100% of 21 reviewers on Facebook recommend the Dravet Syndrome Foundation Inc. Here is a summary of their reviews:
The overwhelming sentiment expresses gratitude and support for the organization, particularly in its efforts to raise awareness about Dravet Syndrome. Reviewers appreciate the resources and information provided by the foundation, emphasizing its positive impact on families affected by the condition.
Many users highlight the strong sense of community fostered by the foundation, noting that it serves as a vital support system for both patients and their families. Overall, the foundation is recognized for its commitment to advocating for those impacted by Dravet Syndrome, delivering valuable support and information.
This AI summary has been generated from reviews found on Facebook.
Is Dravet Syndrome Foundation Inc legitimate?
Dravet Syndrome Foundation Inc is a legitimate nonprofit organization registered as a 501(c)(3) entity. Dravet Syndrome Foundation Inc submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.
Heare are some key statistics you may want to consider:
Executive Compensation: $243,560
Professional Fundraising Fees: $0
Other Salaries and Wages: $223,704
For more financial information, click here
Official website here: www.dravetfoundation.org
What is the mission statement of Dravet Syndrome Foundation Inc?
The Dravet Syndrome Foundation's mission is primarily focused on actively raising funds for Dravet syndrome and related epilepsies. They also support and finance research in these fields. The organization is committed to increasing public awareness about these conditions and offering assistance to those affected and their families. The foundation recognizes the importance of funding innovative research, finding better treatments, and maintaining transparency and accountability in their funding process. Furthermore, they advocate for global collaboration to eventually discover a cure for Dravet syndrome and related epilepsies.
Official website here: www.dravetfoundation.org
Who is the CEO of Dravet Syndrome Foundation Inc?
Ted Odlaug is the Executive Director of Dravet Syndrome Foundation Inc.
Official website here: www.dravetfoundation.org
What is the revenue of Dravet Syndrome Foundation Inc?
Dravet Syndrome Foundation Inc's revenue in 2022 was $2,515,782.
Official website here: www.dravetfoundation.org
Who are the executives of Dravet Syndrome Foundation Inc and what are their salaries?
The average compensation at Dravet Syndrome Foundation Inc during 2022 was $66,752. There are 7 employees and 50 volunteers at Dravet Syndrome Foundation Inc.
Here are 13 key members and their salaries:
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Official website here: www.dravetfoundation.org
Where can I find the form 990 for Dravet Syndrome Foundation Inc?
Dravet Syndrome Foundation Inc's most recent form 990 was submitted in 2022 and can be accessed here.
Official website here: www.dravetfoundation.org
Learn more at the official website: www.dravetfoundation.org
Mission Statement of Dravet Syndrome Foundation Inc
The Dravet Syndrome Foundation is committed to vigorously raising funds for Dravet syndrome and related epilepsies. Its mission extends beyond financial support, aiming to advance research in these areas, boost awareness, and provide assistance to those affected by these conditions and their families. The organization recognizes the importance of funding innovative research, the urgency in finding improved treatments, and the dedication of its donors to make a significant impact in the field of Dravet syndrome and related epilepsies. Furthermore, Dravet Syndrome Foundation prioritizes transparency and accountability in both its own operations and the research it funds, as well as advocating for global collaboration to ultimately discover a cure.
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Impact
October, 2024
Dravet Syndrome Foundation Inc. significantly impacts the field of epilepsy research and support systems for affected individuals and families. Through aggressive fundraising efforts, the organization has allocated over $6.4 million to research initiatives since 2009, focusing on underexplored hypotheses related to Dravet syndrome and other related epilepsies. This funding has been pivotal in advancing studies in areas such as sudden unexpected death in epilepsy (SUDEP), gene therapy, drug discovery, and genetics, laying the groundwork for larger governmental funding opportunities.
By hiring a Scientific Director, the foundation enhances its connection with the medical and scientific communities, ensuring strategic support for ongoing research projects. This role facilitates collaboration with institutions like the NIH and pharmaceutical companies, propelling innovation forward in the quest for better treatments and potential cures.
Furthermore, the foundation prioritizes raising awareness about Dravet syndrome, providing vital information and support to families navigating the challenges associated with the condition. The combination of funding research, fostering scientific collaboration, and supporting those impacted establishes a comprehensive approach to addressing the complex needs of the Dravet syndrome community.
This information is meant to be a general summary of Dravet Syndrome Foundation Inc. Please take the time to review official sources before making any decisions based upon the content provided here.
Financials
This financial information is from Propublica.
Other financial information:
This information is from the most recently submitted tax form from this organization, which was in 2022.
- Investment Income: $88,364
- Program Service Revenue: $662,596
- Gross Receipts: $2,733,455
Assets and Liabilities:
- Total Assets: $6,249,148
- Total Liabilities: $488,374
- Net Assets: $5,760,774
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Programs
Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.
Professional Education & Meetings
Revenue
$149,500
Research Grants
Revenue
$10,000
Patient & Family Services
Revenue
$503,096
Organization Details
Founding Year
2009
Phone
(203) 392-1955Principal Officer
Ted Odlaug
Main Address
PO Box 3026, Cherry Hill, NJ, 08034
Website
www.dravetfoundation.orgNTEE Category
Code: T30 - Philanthropy
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