Epilepsy Drug Development: Clinical Trials – A Patient Perspective

Kim Nye

January 20, 2021

From CURE Epilepsy:

In the finale of our 4-part series exploring the drug development process, we look at clinical trials through the eyes of a participant. Kim Nye, mother of two children with epilepsy and founder of the TESS Research Foundation, shares her experiences enrolling her children in epilepsy clinical trials. Kim provides the patient perspective on finding clinical trials, determining if a trial is right for you and your child, and understanding what will be expected as a participant throughout the trial. Kim also shares advice for those who may not be able to find trials that focus on rare diseases. If you are interested in participating in clinical trials, this episode of Seizing Life will provide you with insights and advice from someone who’s been through multiple trials and continues to participate in order to push epilepsy research forward.

Family Planning After A Genetic Diagnosis

Alleigh Boyd, MS, CGC

August 22, 2020

SLC13A5 Epilepsy is an inherited genetic disorder. What exactly does that mean for families who want to have more children?

Introduction to SLC13A5 Genetics

Elli Brimble, MS

July 25, 2020

SLC13A5 Epilepsy is a recessive genetic disorder. What exactly does that mean?

Toll of Caregiver Trauma

Eileen Devine, LCSW

Feb 2020

Parents of children with chronic illnesses or disabilities are at a higher risk of parenting stress. Caregiving can put a physical and emotional strain on parents, and can even stress neurotypical siblings and extended relations. Taking care of a child with a drug-resistant epilepsy, such as SLC13A5 Epilepsy, is a high risk factor for parenting stress.

We are proud to have joined with several other rare epilepsy organizations (including The Brain Recovery ProjectHope for Hypothalmic Hamartomas, Ring14USA, Phelan-McDermid Syndrome Foundation, Dup15qAlliance, and LGS Foundation) to present a three part series on the toll of caregiver trauma, as it is experienced by the parents of children with medical issues, with advice on how to manage that trauma.

While the webinars are not substitutes for professional counseling, we hope that watching them will lead to more discussions about caregiver stress.

Read Eileen’s blog about parenting children with neurological challenges here.

Clinical Update, Research Update, and What You Need to Know about Treating SLC13A5 Deficiency

Brenda Porter, MD, PhD

October 5, 2019

Dr. Porter explains TESS Research Foundation’s current research projects, why they matter for children with SLC13A5 Deficiency, and answers questions from the families.