Main aim of the charity
The main aim of the Epilepsy Foundation is to End Epilepsy which it strives to do by "increasing awareness and changing the conversation around epilepsy, improving and saving lives through care, advocacy, research and new therapies, and education, and mobilizing everyone to take action."
How the employee got involved and why
In January 2019, after a year of multiple febrile seizures and hospitalizations (including holidays, birthdays, etc.), my almost 3 year old son was diagnosed with epilepsy. As his condition progressed and his seizures continued to be uncontrolled, the emotions and fear that my family experienced were indescribable. As a parent, the helplessness and unfamiliarity of this disorder was paralyzing. Epilepsy is the 4th most common neurological disorder and statistics show that 1 in 26 individuals will develop epilepsy at some point in their lifetime yet we were the only ones of our friends/family to have the diagnosis. Atleast that is what we thought. It wasn't until we became vocal about our journey that others shared their secret with us - proving that stigma and lack of awareness exists.
Rather than quietly sitting back and wallowing, I wanted to take action and improve the quality of life for not only my child but everyone living with epilepsy. On April 7 2019 (less than 3 months after diagnosis), we participated in our first local Epilepsy Fundraising "Walk the Talk" event. Although it is not much, since becoming involved in the Epilepsy charitable community, I have raised over $3,300. My goal is to continue spreading awareness to eliminate the fear/stigma surrounding the disorder and to raise funds to further research and hopefully one day find a cure. Our journey has been difficult and extremely common in the epilepsy community. If at the end of the day I can play ANY role in improving just one small aspect in someones life surrounding the disorder, that makes the effort all worthwhile.
What work does the employee do for charity?
I am a Volunteer Ambassador for the Epilepsy Foundation of North America. In my role, I utilize my personal social media platforms to spread epilepsy awareness and education while also organizing fundraising initiatives. In July 2020 I also created an IG channel - Epilepsy Parent Confessions - to further assist in my epilepsy awareness efforts. Through the assistance of the foundation, I also contact local community leaders (i.e. politicians, school board, etc.) to ensure those suffering with Epilepsy, especially the more than 470,000 children living in the U.S., have a safe and stigma-free environment.
In addition to my ambassador role with the Epilepsy Foundation, I also support my local Epilepsy organization's (Epilepsy Florida) annual "Walk the Talk" fundraising event by creating a team and raising donations. Unfortunately due to COVID-19, this years walk was cancelled and fundraising efforts cut short but I do look to increase our goal next year.