About Us
The Laney MacLeod Foundation for Epilepsy Research is established in honor of Delaney Emily MacLeod “Laney,” our amazing daughter who lost her life to Sudden Unexpected Death in Epilepsy (SUDEP) within 3 years of being diagnosed with epilepsy. The foundation's mission is to support medical professionals and philanthropic organizations dedicated to the treatment of epilepsy and the mitigation of SUDEP risk factors, the leading cause of death in epilepsy.
Our World Changed
We do not understand why Laney’s doctors never disclosed the risk of death associated with our daughter’s epilepsy. We learned about "SUDEP" only after hearing from the medical examiner on April 28, 2024, when we were told that our daughter was found in her University of Washington apartment without a pulse. She was 20 years old, a pre-med honor student who had graduated high school in 3 years, and was pursuing her bachelor’s in Medical Laboratory Sciences all while working as a Phlebotomist at Swedish Hospital and as a research intern at UW Medicine’s Cardio-Thoracic Surgery department.
Laney was extremely driven, zealously sought to achieve her dreams of becoming a doctor, and wanted to save children from cancer. Most of all, she was our beautiful, loving, and compassionate daughter and best friend who graced us with her love of life, artwork, furniture making, macramés, plant propagating, cooking of our family recipes, and each passionate pursuit she embarked upon every day of her life.
The SUDEP Secret
It was heartbreaking to learn, only after her death, that each of her nocturnal tonic-clonic seizures significantly increased her risk of SUDEP. As a college student, who was sleeping unsupervised and reporting break through tonic-clonic nocturnal seizures, Laney should have been told about the SUDEP risk factors. This risk was never disclosed to us when she was diagnosed with epilepsy in California, as a minor. It was not disclosed to her when she began having breakthrough seizures and was treating with a second set of doctors in Washington, as an adult. In the months leading up to her death, Laney had reported having had multiple tonic-clonic seizures, despite taking her anti-seizure medication as prescribed. Yet, even then, she was not advised of SUDEP or that her risk of death increased significantly with each uncontrolled seizure. Had Laney been advised that her seizures put her at risk of dying, or that this risk increased 15 times after 3 tonic-clonic seizures, it would have changed everything and our daughter would likely be alive today.
Mission to Help Doctors Cure Epilepsy and Mitigate the Risk of SUDEP
As we struggle to survive the loss of our daughter, who was our past, present, and future, we honor her life and dedication to the medical field, by establishing The Laney MacLeod Foundation for Epilepsy Research. While the world has lost all that Laney was and was going to accomplish, the foundation's goal will be to inspire and support medical research, clinical studies, and legislation governing the treatment of epilepsy and the mitigation of risks associated with SUDEP. Through the funding of medical research, data collection, and clinical projects, we hope to facilitate expert discussion and guidance that will aid physicians treating patients facing epilepsy with the goal of eventually eliminating the risk of SUDEP entirely.
The Laney MacLeod Foundation for Epilepsy Research supports medical professionals and philanthropic organizations dedicated to the treatment of epilepsy and the mitigation of SUDEP risk factors, the leading cause of death in epilepsy and is a California non-profit corporation organized and operated exclusively for the purposes set forth within Internal Revenue Code section 501(c)(3).
Feel free to contact us if you wish to share information or have any words of wisdom to help with our efforts to save others from experiencing this kind of overwhelming grief and devastating loss.
