Dravet Syndrome Foundation

Dravet Syndrome Foundation is a non-profit organization dedicated to aggressively raising research funds for Dravet syndrome and related genetic epilepsies to enable better treatments and a cure while assisting afflicted individuals and their families. Established in response to the lack of information and resources available for this severe form of epilepsy, the foundation has become a beacon of hope for families and individuals suffering from Dravet syndrome and similar disorders.

Overview

Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare and catastrophic form of intractable epilepsy that begins in infancy. It is characterized by frequent, prolonged seizures often triggered by high body temperatures or fever. As children with Dravet syndrome age, their condition becomes more complex with intellectual disability, motor deficits, and ongoing difficult-to-control seizures. The Dravet Syndrome Foundation was founded by parents of children with Dravet syndrome, who were driven by the desire to increase awareness, provide support to affected families, and fund research aimed at finding a cure.

Mission and Goals

The primary mission of the Dravet Syndrome Foundation is to raise research funds for Dravet syndrome and related epilepsies, while providing support to individuals and families living with these conditions. The goals of the foundation include:

• Funding innovative research projects that have the potential to significantly advance understanding and treatment of Dravet syndrome and related conditions.
• Increasing awareness of Dravet syndrome among the public and medical communities to improve diagnosis and treatment.
• Supporting families affected by Dravet syndrome through educational resources, community events, and patient advocacy.

Research and Funding

The Dravet Syndrome Foundation has been instrumental in funding cutting-edge research focused on understanding the genetic causes of Dravet syndrome, developing new and more effective treatments, and ultimately finding a cure. The foundation awards grants to researchers worldwide, following a rigorous review process to ensure that funds are allocated to projects with the highest potential impact.

Support and Resources

In addition to funding research, the Dravet Syndrome Foundation provides a variety of resources and support services to families and individuals affected by Dravet syndrome. These include:

• Educational materials and resources to help families, caregivers, and medical professionals better understand the condition.
• Support groups and online forums where families can connect, share experiences, and offer mutual support.
• Conferences and workshops focused on educating families and caregivers about the latest research developments, treatment options, and care strategies.

Events and Fundraising

The Dravet Syndrome Foundation organizes and supports various fundraising events throughout the year, including galas, charity runs, and awareness campaigns. These events not only raise crucial funds for research and support services but also help to build a community among families, researchers, and supporters.

Conclusion

The Dravet Syndrome Foundation plays a critical role in the fight against Dravet syndrome and related genetic epilepsies. Through its commitment to funding research, raising awareness, and supporting affected individuals and families, the foundation continues to make strides towards a future where Dravet syndrome can be effectively treated or cured.

NIH genetic and rare disease info

• NIH info on Dravet Syndrome Foundation

Dravet Syndrome Foundation is a rare disease.