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DSF Steps Toward A Cure Walk Coordinator Application - dravetfoundation

DSF Steps Toward A Cure Walk Coordinator Application - dravetfoundation 2025

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The document is an application form for coordinators wishing to organize a 'Steps Toward A Cure' walk for the Dravet Syndrome Foundation (DSF). It outlines the necessary information required for approval, including coordinator details, walk site information, event specifics, and compliance with local regulations. The form emphasizes that promotion is prohibited until approval is granted and details the financial responsibilities of the DSF regarding event expenses. Additionally, it includes sections on raffle permits, food sponsorships, and guidelines for using official DSF event pages for participant registration.

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Is there a cure for Dravet syndrome?

Although there is no cure for Dravet syndrome, most treatments aim to reduce seizures. First line anti-seizure medications include clobazam (Onfi, Frisium) and valproic acid (Depakote, Depakene).

What are the stages of Dravet syndrome?

Dravet syndrome usually has three phases: (1) up to 1-1 years: with episodes of febrile status epilepticus but normal development; (2) age 1 to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating

Does Dravet syndrome cause brain damage?

Dravet syndrome is a disease characterized by prolonged and frequent seizures that begin in the first year of life and are difficult to control with medication. These seizures are harmful to the developing brain and can cause cognitive and behavioral impairment in patients.

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Is Dravet syndrome a terminal illness?

The majority of individuals with Dravet syndrome (80% or more) docHub adulthood. Patients with Dravet syndrome face a 15-20% mortality rate due to Sudden Unexpected Death in Epilepsy (SUDEP), prolonged seizures, seizure-related accidents such as drowning, and infections.

Can a child grow out of Dravet syndrome?

Dravet syndrome is a rare, severe, and lifelong form of epilepsy (seizure disorder). Most people affected by this condition have a good life expectancy. The disease typically starts in the first year of life, and around 80-85% of the children survive into adulthood.

Is Dravet syndrome a disability?

As a rare and severe genetic disorder that progressively worsens with time, Dravet Syndrome is a part of the Social Security Administrations (SSAs) Compassionate Allowances (CAL) program, which means disability applications filed for the condition are reviewed more quickly and are rarely denied.

What is the average age of death for Dravet syndrome?

Up to 85% of children with DS docHub adulthood, while 15% to 20% die in childhood or adolescence. Most deaths occur prior to 10 years of age (73%), with a mean age at death of 8.79.8 years. Approximately 93% of deaths in individuals with DS occur before the age of 20 years.

What is the life expectancy of a child with Dravet syndrome?

Life expectancy for those with Dravet syndrome. Of all the epileptic conditions, Dravet syndrome is believed to have a higher mortality rate. Current statistics suggest that roughly 10% to 20% of people with the condition wont docHub adulthood. For this segment, few survive beyond the age of 10.

DSF Steps Toward A Cure Walk Coordinator Application - dravetfoundation 2025

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