The Administration wants to close the U.S. Department of Education, and Congress needs to take action. Without an appropriate education, students with disabilities face higher rates of poverty, unemployment, poor health, and social isolation. The Department of Education is crucial for students with disabilities. It holds states accountable when they’re not meeting the needs of […]
Protect the Department of Education Read More »
There is a new effort underway to create a National Plan for the Epilepsies. This legislation, if passed, would direct the federal government to develop a National Plan for Epilepsy to prevent, diagnose, treat, and cure the epilepsies and improve the well-being of people with epilepsy and their families. We support anything that would bring
National Plan for the Epilepsies Read More »
A caucus is a group of bi-partisan legislators that join together to support a specific cause. This newly formed Epilepsy Caucus will help to promote legislation that will benefit the epilepsy community, so we need to get as many members as possible to join. Click below to check to see if your legislators are already
Congressional Epilepsy Caucus Read More »
The Accelerating Kids Access to Care Act would make it easier for patients to see providers out of state because it would set up a framework for doctors to more easily accept Medicaid plans from other states. For our community, that means potentially not having to pay out of pocket to see a Dravet specialist
Ensure Out of State Medicaid Coverage Read More »
Overview provided by 5calls.org: On February 7, the Trump administration moved to cut billions of dollars in funding from the National Institutes of Health (NIH) and National Science Foundation (NSF) by placing an immediate cap on “indirect costs”. Indirect costs include infrastructure, facility maintenance, and staff salaries. These funds ensure that research can happen. This new policy will
Save Research Funding Read More »
Congress is beginning to make decisions about how much funding each program will get next year, and programs that support and protect people with disabilities are at serious risk. The President’s budget proposal is the starting point of this annual process. It recommends that Congress make cuts to programs that millions of people with disabilities
Protect Disability Services Read More »
Haz clic en este enlace para abrir la plantilla de perfil. Nota: Si no tienes una cuenta de Canva, deberás crear una cuenta gratuita aquí para continuar. Seleccione “Usar plantilla para nuevo diseño” Selecciona “Cargas” en el lado izquierdo y “cargar archivo” o arrastra y suelta la imagen que quieres que sea tu foto
Crea una foto de perfil personalizada para redes sociales Read More »
Each year, Dravet Syndrome Awareness Month – observed from June 1 to 30 in the U.S. – provides a crucial opportunity to highlight the often-overlooked challenges and unmet needs of those living with Dravet syndrome. It is a meaningful time for the Dravet community to raise visibility, share stories, and ensure that the voices of
Turn Awareness into Action this June! Read More »
At DSF, we are guided by a commitment to transparency, accountability, and connection to our community. Each year, our annual report is more than just a summary of numbers – it’s a story of the lives we’ve touched, the progress we’ve made, and the vision that continues to guide our mission. Our 2024 Annual Report
See the Difference You Made – 2024 DSF Annual Report Now Available! Read More »
TOOLS TO SUPPORT YOUR AWARENESS EFFORTS: 30 Days of Advocacy Calendar Downloadable Dravet Facts graphics Turning Awareness Into Action: Tips for Advocating Six ways to #AdvocateforDravet graphic Protect essential programs funding graphic Example emails to legislators “I Advocate for Dravet” customizable template “My Dravet Warrior Is” customizable template “Three Things I Wish You Knew” template
2025 DRAVET SYNDROME AWARENESS MONTH TOOLKIT Read More »
