This year marks an important milestone for the Dravet Syndrome Foundation (DSF): ten consecutive years of earning the Platinum Seal of Transparency from Candid (formerly GuideStar).
While seals and ratings are never the reason we do our work, this recognition reflects something that has always been fundamental to our mission – our commitment to transparency, accountability, and responsible stewardship of every dollar entrusted to us.
A Personal Commitment
DSF was founded by parents of children with Dravet syndrome who were searching for answers, resources, and hope for their families. Today, many members of our staff, leadership, and broader community still have a loved one living with Dravet syndrome.
Because of that, the work we do is not just professional – it is deeply personal.
When we talk about funding research, improving care, or supporting families, we are often talking about our own children, siblings, friends, and community members. The decisions we make about how resources are used are guided not only by strategy, but by a shared understanding of what families truly need.
Why Transparency Matters
Families affected by Dravet syndrome face extraordinary challenges. When they choose to support DSF – whether through donations, fundraising events, or volunteer efforts – they are placing their trust in us to use those resources wisely and effectively.
That trust is something we take seriously. Transparency is not simply about meeting reporting requirements. It is about openly sharing how decisions are made, where funds are allocated, and how those investments move research, education, and patient support forward.
What the Platinum Seal Represents
The Platinum Seal of Transparency is the highest level of recognition awarded by Candid. Organizations that receive it provide detailed information about their mission, programs, leadership, finances, and the measurable impact of their work.
Maintaining this designation year after year requires ongoing effort. We have to regularly update information, share program outcomes, and make sure that donors, patient families, researchers, and partners can easily see how DSF operates and the results we are working toward.
Responsible Stewardship
At DSF, fiscal responsibility is central to every decision we make. From funding research initiatives to supporting educational programs and community resources, we are committed to ensuring that donations are used thoughtfully and strategically.
This means carefully evaluating opportunities, prioritizing programs that will have the greatest impact for individuals and families living with Dravet syndrome, and maintaining strong oversight of our financial practices.
A Shared Achievement
While the recognition is awarded to DSF, it truly belongs to our entire community – our donors, patient families, volunteers, researchers, and partners who believe in the importance of transparent and responsible nonprofit leadership.
Your support makes this work possible, and we remain committed to honoring that support with openness, accountability, and a continued focus on meaningful impact.
As we mark this ten-year milestone, we look forward to building on this foundation. We will continue to advance research, support families, and raise awareness while upholding the same standards of transparency that have guided us from the beginning.
