Having Conversations
Some conversations are tough to have when you don’t know where to start. And especially when it comes to talking about the topic of Long-Term Care Plans for your loved one with a rare epilepsy. Below are insights shared by…
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Guardianships and Conservatorships
The definition and rules governing Guardianship vs. Conservatorship can vary from state to state; therefore, please seek legal advice for details on your specific state laws and what type of guardianship or conservatorship your loved one will require. A guardianship…
Transition of Care for an Aging Caregiver
Growing old is an inevitable part of life, but it can be especially daunting for those who care for individuals with a rare epilepsy. Life as a caregiver (e.g., cooking, managing medicines, medical appointments, therapy, etc.) can lead to decreased…
In Loving Memory of Hesekiah
04/29/2010 - 11/16/2024
Hesekiah brought joy into every room he entered, always wearing the brightest smile — no matter what he was facing. He had a heart full of love for everyone he met and a deep appreciation for life’s simple pleasures, especially…
A Mother’s Love, A Community’s Support:
Our Journey with Evan and LGS
My name is Ashlee, and I’m the proud mother of Evan—our joyful, resilient 5-year-old son who has completely reshaped our world. Evan was born with Muscle-Eye-Brain Disease, a rare genetic condition that presents many medical challenges. From abnormal brain folds…
Aging Out of School into Daily Life
Ages 19-22
Transition to adulthood is a complex, confusing, and often emotional process. It’s also the first important step to plan for as you consider the long-term adult C.A.R.E. Plan for your loved one. For each family, the process can look and…
Preparing for the Transition to Adulthood
Ages 17-18
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” If your loved one is older than age 13 and…
Getting Started in Adolescence
Ages 13-16
Many families ask, “When should I start planning?” Some families may be feeling they are already behind in the process and are wondering, “Is it too late to start planning?” While this guide targets age 13 as a starting point…
In Memory of Harrison James Camarro
12/25/1996 - 04/07/2025
Harry’s Joy Ride: A Tribute to Laughter & Love One of our favorite memories with Harry happened on long car rides. Like many families, we’d be cruising down the highway, music playing, conversations flowing. But what made our drives unforgettable…
The Lighthouse Clinical Study
The Lighthouse Clinical Study is currently enrolling children and adults with Lennox-Gastaut Syndrome (LGS) to evaluate a new potential treatment. The goal of this study is to learn whether an investigational medication called clemizole can help reduce the number of…