National Seizure Disorders Foundation
I know you are all interested in what the new member of REBSEA brings to the table and I intend in this letter to present a complete picture for you today.
My name is Tonya Heathco, a.k.a. Terrific Tonya Heathco. I am the Founder & President of grassroots 501(c) 3 non-profit National Seizure Disorders Foundation. We provide the solution for people looking for support, acceptance, comfort, and resources as they adjust to their lifestyle of seizures until a cure for the individual is found. Resources we provide include but are not limited to:
· Easy to digest information on diagnosis, medications, testing, and therapies
· Seizure detection monitors
· Assistance in fundraising for training of seizure service canines
· Behavior modification
· Resources leading to healing emotions from the inside out
We are a growing company that meets the needs of people living with seizures as well as the needs of the family caregiver. Why do we do this?
· 1 in 26 Americans will experience seizure during their lifetime
· Every 4 minutes someone is diagnosed with life altering seizure disorder
· One third of people diagnosed experience uncontrolled seizures
· 7 out of 10 cases have unknown cause.
· Until our work began, there was no resource for people diagnosed to become more than their diagnosis.
· Until our work began, there was no resource for family caregivers to help their affected loved ones become more than victims.
Because every 4 minutes someone is diagnosed with life alerting seizure disorder and they are given no outlet for support, education, and resources needed to help them lead a higher quality of daily life. Much of the time, these newly diagnosed people are left to become victims of their diagnosis and as result their self-worth dwindles away leading them into isolation, depression, and even suicide.
Seizure disorder is more than a disease, it is a lifestyle. Seizure disorder affects the whole life of the person experiencing seizures and the whole life of the loved one caring for that person. Would you know where to turn for support, acceptance, comfort and resources should you, your child, or a loved one experience a seizure suddenly and be then next diagnosed with seizure disorder?
Current statistics show 1 in 26 Americans will develop Epilepsy (aka seizure disorder) during their lifetime.
My personal experience as one diagnosed with uncontrolled and incurable seizure disorders inspired the idea for National Seizure Disorders Foundation. Our Vision is Divine and driven by compassion. Our motivation is the personal stories of the people of all ages diagnosed with seizure disorder(Seizure Survivors), people taking care of a loved one experiencing seizures(Caregivers), and the people having lost their life suddenly through SUDEP -Sudden Unexplained Death in Epileptic Patients -(our Angels with Purpose).
One such motivation is intertwined in my personal life. November 29 2012: During a daily mail check after a powerful morning moment with my daughter on the phone, I was overjoyed to discover our charity, National Seizure Disorders Foundation, received the final donation check for my daughter’s future seizure service canine. The details were ready to go , we just needed this final check to begin training. I was elated and ran to the phone to give her a call. I was met by a ringing phone with the call coming from her number. I picked up the phone with excitement to be greeted by uncontrolled sobs. The caller was my son in law sharing the news of my daughter’s sudden passing. The trauma is too intense to put into words here. The message is important for you today: If donations had come to NSDF a few months earlier, my daughter Jesyka may still be with us today and have the daily service of her seizure service canine. SUDEP only took a second to forever change my life as it took my only daughter from me. In that moment the future of NSDF would change. Our motivation became to do everything in our power to place seizure service canines and monitors in every affected person’s home across America. So began our awareness and fundraising efforts out of trauma so that others may experience Joy.
Why does NSDF choose to work with REBSEA? In the vision of National Seizure Disorders Foundation, there are individuals, businesses, and corporations that have in common a desire to be a part of something bigger than themselves and to help others become more. REBSEA is such an organization. Together REBSEA and National Seizure Disorders Foundation make a future of freedom possible for 3 million people, and their caregivers, currently affected by seizures. Working with REBSEA is more than a choice for National Seizure Disorders Foundation. We believe it is Divine guidance.
Thank you for sharing a moment with me today. I encourage you to consider National Seizure Disorders Foundation to satisfy all of your charitable giving needs. When you decide you are ready to be more, please contact me and we will personalize a giving program that will benefit YOU and NSDF.
National Seizure Disorders Foundation
228 College Street
Burns TN 37029