Transparency
The epilepsy community is strong, and we fight for our rights in Congress with one hand and give generously to epilepsy organizations with the other. However, we must not only support our representatives and nonprofits, but we MUST also hold them accountable. Here we provide information. If you want an opinion, you will have to tune in!
The National Plan for Epilepsy Act
A landmark initiative to improve epilepsy care, research, and public awareness across the United States. This legislation mandates that the U.S. Department of Health and Human Services develop and maintain a comprehensive national epilepsy plan, with annual progress assessments to ensure accountability and effectiveness.
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Epilepsy Foundation Non-Profit Tax Filing
The Epilepsy Foundation receives the largest piece of the fundraising pie, by far. There are some conflicting statements regarding the Foundation’s reach as well as a few red flags on its 990. We’ve reached out and will update you here.
Check back for updates as we dive deeper and ‘follow the money’!
Insurance Companies Win, We Lose
Legacy media touts ‘Dylan’s Law’ as a win for the epilepsy community; the family behind the law doesn’t agree. Oklahoma Governor Kevin Stitt vetoed the bill that would have required broader insurance coverage for epilepsy treatment, including medications, surgeries, and physician-prescribed neurostimulation devices designed to reduce the risk of severe or fatal seizures.
We are reaching out to Governor Stitt’s office for comment; we’ll post his office’s responses here!