On August 13th, I will be participating in a 2.4 mile open water swim event in Coeur d'Alene Idaho. Will you join me in raising money to benefit the Epilepsy Foundation? Any donation will help make an impact. Their mission is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures and save lives. The Epilepsy Foundation of Greater Los Angeles fulfills this mission by leading the fight to END EPILEPSY.
Thanks in advance for your contribution to this cause that means so much to me in honor of my younger brother Michael Weaver who passed unexpectedly in 2004 at the age of 32 having aspirated while experiencing an epileptic seizure. The cause of death was diagnosed as Sudden Unexpected Death In Epilepsy (SUDIP). Michael was found prostrate on his abdomen, face down on the floor. Just one month earlier he had become engaged.
Like many young adults, Michael struggled to find his path. While extremely bright, traditional academic studies were not his thing. At 21 and just two weeks short of completing EMT training (emergency medical technician), he had his first gran-mal seizure, which immediately ended his eligibility to work as an EMT.
This began a soul-searching journey and ultimately led Michael to complete training as a massage therapist incorporating energy work with his clients. His struggle with epilepsy was an ongoing concern as he continued to experience more seizures. Left untreated, epilepsy can have devastating effects.
Following his first seizure, a neurological workup and an MRI study failed to reveal any notable cause. Michael was prescribed Dilantin, an anticonvulsant medication. He didn’t like how the medication made him feel. This can be a common experience, which led him to either skip or discontinue taking his medication.
Michael lived among the mountains of Sandpoint, Idaho where he was surrounded by his love for people, music, water and nature. He even worked for a short time at Coeur d'Alene Resort as a massage therapist. As an accomplished swimmer, diver, youth swim instructor and coach, and his professional work as a massage therapist, Michael made friends with ease and had a big heart for helping others. His creative spirit led him to become a self-taught musician playing the guitar, flute and didgeridoo (a very difficult instrument to play). Michael, a friend of many, was an old soul with a carefree spirit known for his uncanny humor bringing laughter and joy to everyone he met.
It's been nearly 20 years since he passed away and it is my hope in sharing this message that we can raise awareness and make a difference on the impact of epilepsy and other neurological health concerns. In February 2023, The World Health Organization highlights the following key facts:
- Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages.
- Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally.
- Nearly 80% of people with epilepsy live in low- and middle-income countries.
- It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated.
- The risk of premature death in people with epilepsy is up to three times higher than for the general population.
- Three quarters of people with epilepsy living in low-income countries do not get the treatment they need.
- In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination.
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