Ann Maxwell founded the Muir Maxwell Trust (MMT) in 2003 to provide practical support for families after her son Muir, now 15, was diagnosed with Dravel Syndrome - a severe form of epilepsy.
She has now called on the Scottish Government to manage through the NHS the long-term care needs of children with severe epilepsy. That would let the MMT and other charitable and specialist bodies focus on finding a cure, she said.
Ms Maxwell said the NHS should fund epilepsy alarms, which alert parents when a child has a seizure while they sleep.
She said more than 100,000 people under 21 live with epilepsy in the UK. At least 20,000 are severe sufferers.
She said the funds and attention of the MMT were increasingly being "pulled in the direction of managing the symptoms and meeting the costs of care."
She added: "What we now need to see is more of a partnership structure. The government has a moral obligation to provide ongoing care and support to sufferers of severe epilepsy and their families. By funding devices like epilepsy alarms and offering assistance such as long-term residential care, this would free up organisations like the MMT … to finally find possible cures."
A Scottish Government spokesman said it was working with the MMT and the National Neurological Advisory Group on a survey on epilepsy alarms to find the views of people with epilepsy, parents and carers.