Supporting Epilepsy At the Capital Building in Connecticut
What it Means to be an Advocate

Epilepsy Advocacy in Connecticut

Individuals with Epilepsy face unique obstacles to care including difficulty accessing proper medications, inflated cost of treatment, and limited state and federal resources.

Through the Epilepsy Foundation of Connecticut's dedicated network of Advocates and events such as our annual Advocacy Day, we’re determined to fight for key policy issues in both the State and Federal capacities.

Epilepsy Foundation of Connecticut 2019 Legislators of the Year

Senetor Matt Lesser

Senetor Matt Lesser

The Epilepsy Foundation of Connecticut have selected Senator Matt Lesser and Representative Themis Klarides to be our 2019 legislators of the year. This is the first year that the Epilepsy Foundation of Connecticut has awarded this distinguished honor. The Epilepsy Foundation of Connecticut looks to give this award to legislators that champion policies that seek to improve the lives of the 36,000 individuals living with epilepsy in Connecticut.

Representative Themis Klarides

Representative Themis Klarides

We are very pleased to present this award to Senator Matt Lesser who was instrumental in leading the foundation’s efforts to bring awareness to the crisis of Sudden Unexpected Death in Epilepsy (SUDEP). Senator Lesser sponsored S.B. 396, “AN ACT CONCERNING SUDDEN UNEXPECTED DEATH IN EPILEPSY”, which was intended to encourage accurate reporting of SUDEP instances on death certificates and to collect critical data on SUDEP cases in the hopes of identifying and reducing risk factors for individuals living with epilepsy. Senator Lesser’s efforts on this legislation allowed for a constructive dialogue between the Epilepsy Foundation’s advocacy team and the State’s Chief Medical Examiner’s office. Although there is still more work to be done on this issue, we greatly appreciate his strong efforts during the 2019 legislative session.

We are also very pleased to present this award to Representative Themis Klarides who was instrumental in expanding the Katie Beckett Waiver Program through additional funding in the state budget. The Katie Beckett Waiver Program is particularly important to the epilepsy community due to the high level of care required for individuals with rare forms of epilepsy. Too often families are on the waitlist for unreasonable lengths of time which places 100% of the home care burden onto the families. Representative Klarides’s efforts resulted in an increase in the number of children and young adults with severe disabilities who may receive care at home under this Medicaid waiver program. This additional funding was essential in allowing vulnerable families to access the necessary resources to better care for their loved ones with epilepsy. We truly appreciate Representatives Klarides’ leadership on this very important issue and look forward to working with her in the future.

Epilepsy Legislative History

2011 Passed landmark legislation switching bill. Connecticut became the 1st state in the country to require the pharmacist to receive consent of a physician before substituting epilepsy medication.
2015 Passed legislation that allowed for critical access to the emergency seizure medication, Diastat, in a school setting.
2018 Hired full time government relations advocate .
2019 Successfully advocated for adding additional state funding for the Katie Beckett Waiver Program.
2019 Helped pass a bill to establish a task force to increase employment opportunities for persons with disabilities, including those living with epilepsy.

We Need Your Help!

The Epilepsy Foundation of Connecticut leads the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures and save lives.

We need your help! Join our growing force of Advocates and help us in our mission to create positive change in Connecticut and on Capitol Hill. Contact us to see how you can become an Advocate today.