LGS Foundation

Hi everyone!

For those of you that know me, November is a very important month to me. November is national epilepsy awareness month, a month dedicated to bringing awareness, love and hope to those with epilepsy. This month serves as an opportunity for those with 2.9 million Americans that struggle with epilepsy to bring light to their experiences and bring hope for a cure. Unfortunately, epilepsy is a costly condition to manage due to medication, doctor expenses, treatment and more. This incredible foundation has funded breakthrough research resulting in effective medications and life changing treatments. However, with all this work, there is still so much to do.

My brother Jonathan (aka my best friend) has struggled with Lennox-Gastaut syndrome for 22 years. Lennox-Gastaut syndrome is a complex, rare, and severe childhood-onset form of epilepsy. It is characterized by multiple and concurrent seizure types, cognitive dysfunction, developmental and intellectual delays. Typically, it presents in ages 3–5 years and persists into adulthood. Jonathan, at age 3, began having multiple seizures, sometimes hundreds, a day. He spent the next 18 months in and out of the Chapel Hill Children Hospital. During this time our family was told that if he survived the seizures, he would not lead a normal life and there would be numerous challenges ahead. While he did face severe struggles along the way, including learning and developmental disabilities, school issues and social delays he has persevered. With the help of top doctors, therapists, teachers and family members, Jonathan is now a thriving 25-year-old.

Jonathan works his butt off at Chick-fil-A, drives a truck (blue panther), and has an army of loved ones. While all of his challenges exist, Jonathan has been able to use his “badass-ness” to become one of the smartest people I know. I call him my “walking sports almanac” because he can tell you the name of any football player, their high school, girlfriend, stats, award, etc. In addition, his compassion and love for others is his biggest strength. My relationship with my brother is very special. We became extremely close in 2020 during covid. I never imagined that my brother would grow to become my best friend, often canceling plans with friends so we could hang out. He is also my go to Marvel movie fan and advice giver. While Jonathan's struggles may have posed him many challenges, his strength and kindness led him to the man he is today.

Jonathan may be healthier now, but unfortunately his struggles will never go away. Epilepsy still has no permanent fix or universal solution, which is why this foundation needs help. There is so much to learn. This month serves as my month to give back to the foundation, the foundation that saved my brother's life. My brother's story, along with millions of others, deserved to be brought to life, and recognized. In addition to this fundraising effort, I'm also selling bracelets where 100% of the proceeds go to the Lennox Gastaut Foundation. I will include my contact information on the interest form for the bracelets. My fundraiser will run the entire month of November. Thank you for all your interest, love and support, let's have the best month ever!

Other ways to support

Epilepsy foundation (When donating please put in honor of Jonathan Tooles behalf!!!!)

https://give.epilepsy.com/page/33651/donate/1

https://docs.google.com/forms/d/1dEPEqLF7EXgTk55EDMBcukJk23GaGHRXTtiOcwLSFuE/prefill