Events

The tools that are currently being used to measure the progress of people with developmental and epileptic encephalopathies (DEEs) are not able to capture their small improvements, which could jeopardize trials of new disease-altering treatments. The goal of the Inchstone Project is to identify and develop measures that are sensitive to the small but important…

Have insurance companies or Medicaid refused to cover critical prescribed treatments claiming they were off-label and not "medically necessary"? Is coverage denied because treatments that may work for you or your child are not on compendia - a compilation of evidence-based, off-label treatment options? Nearly half of chemotherapy drugs prescribed today are off-label but there…

Complex Care programs are primary care for children with complex chronic medical conditions, often with multiple diagnoses and dependent on technology (i.e. ventilator), tube fed, etc. This is a medical home for your child with clinicians who understand and work to help manage the complexity of your child's care. Additionally, complex care programs - both…

Join us for a discussion with rare caregivers about the challenges of self-care. People are fond of telling us we need to care for ourselves but that can often seem like a luxury when you are caring for a medically complex child. We will talk about ways that we both struggle with and have learned…

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies. This will be the first of our monthly opportunities to connect via Zoom with other DEE caregivers. Once you register, you will be able to access any future meetings with the same link.

Join us to learn more about the brain - bone connection. We are still learning but both epilepsy and anti-seizure medications (ASMs) are associated with adverse effects on bone health. Those taking ASMs have increased rates of bone loss and other issues that may contribute to an increased risk of fracture. So what can we…

School is just around the corner for many. It's a good time to revisit the world of IEPs Erin Prosser, Rare Disease Mom and Certified Master IEP Coach, will join us to provide a Crash Course on how to prepare, what to consider, and what to expect in the process. We hope you can join…

Come join us as we discuss the experience of having a child with an undiagnosed rare disorder. We’ll discuss different ways of navigating the experience, the challenges, and the benefits of connection and community.

Join us for an opportunity to connect with other parents/caregivers and chat about our experiences raising children with DEEs/rare epilepsies.

Have you ever wondered about the benefits of EEG readings that our children receive? Join us for an illuminating session with Dr. Jay Pathmanathan, MD from Beacon Biosignals, pediatric epileptologist Ingo Helbig from Children's Hospital of Philadelphia and Leah Schust Myers and Shawn Egan from our partners at FamilieSCN2A Foundation for an EEG 101 and…