You are the Key to Independence
We want to take a moment to tell you about one of our devoted volunteers, Dan Dougherty. Dan has had epilepsy since age 10 and lives every day wondering when his next seizure will occur. This is the reality that many individuals face every day, but Dan doesn’t let his uncontrolled seizures stop him from living his life to the fullest. He has found his calling as an epilepsy advocate and is on the path to become a professional motivational speaker.
But Dan didn’t always live this kind of life. Throughout young adulthood, he dealt with depression, isolation, frustration and fear. He endured countless exhausting hospital visits, each inspiring short-lived hope yet ultimately resulting in bitter disappointment. He was not a candidate for surgery – pursuing that route would render him permanently blind. There was no simple solution or medication to help Dan. Instead, he would be forced to live with the uncertainty and challenges that epilepsy entails every day.
There is a very real emotional and psychological side to epilepsy that a lot of people don’t realize. I would spend hours alone in my room, paralyzed by the fear and stigma attached to epilepsy. I didn’t know where to turn to for help, so instead I retreated in myself – into my dungeon, said Dan.
With the help of the Epilepsy Foundation Eastern PA (EFEPA) and his supportive family, Dan slowly changed his outlook on life for the better. He started seeing a therapist who worked through his frustrations and fears of being a person with epilepsy. He worked with the EFEPA to become trained as an H.O.P.E Mentor (Helping Other People with Epilepsy), our training program that guides people with epilepsy to be patient educators and mentors, as well as allowing them to conduct presentations in their communities. He also started attending EFEPA run monthly support groups in the Philadelphia region, getting over his fear of being associated with epilepsy and developing peers who were going through the same things as Dan. He realized that “if you can communicate about it, you are on your way to accepting it,” a motto that the EFEPA wants to instill to all of our constituents, particularly our young adult population.
Dan told us his story coming off of a stint of 12 seizures in one day. Yet he remains undeterred. Inspired by his life and those of so many other individuals with epilepsy, we have created the Keys to Independence program, geared towards young adults to help ease their transition into adulthood The program consists of Personal Care Management, Vocational Planning, and Community Building with the goal of eradicating the depression, isolation and frustration that many of our young adults are going through.
Dan can attest that the constant threat of not knowing when your next seizure will occur can discourage anyone from having a positive outlook on life, but we want our young adults to manage their own medical needs, even if they still are having uncontrolled seizures. By taking control of one’s health, then and only then, will they dictate the terms of their lives.
With the help of the EFEPA, Dan has discovered his passion for public speaking through his H.O.P.E. training, but many young adults do not know what they want to do. We will provide them with a skills assessment evaluation, called UCiphertm, which will illuminate their strengths in addition to H.O.P.E. training, with the intention of encouraging ownership and acceptance of their epilepsy.
Dan spent much of his young years isolated from peers. Understanding the emotional and psychological toll this takes, we want to ensure that all of our young adults have an opportunity to socialize with other peers who are going through similar issues. We plan on hosting team building activities including a young adult retreat that will help create a support system they can always count on.
This program will not be possible without your support. Will you donate today to get this program off the ground and help reach future generations of young adults?
Your donation will make a difference. Consider contributing at the following levels:
H.O.P.E. Training program and materials—$30
UCiphertm skills assessment evaluation—$50
Resources for creating “Medical Management Binders” —$100
Partial scholarship for individuals pursuing vocational training classes—$250
Team building activities led by professionals—$500
Rental for the Young Adult Retreat—$1,000
Epilepsy does not have to limit a young adult’s life. Seizures may mean an individual can’t drive or move out on their own right away. But just as Dan faced and overcame his challenges, it is our hope that our young adults can live an independent life with their epilepsy – not in fear of it.
Thank you in advance for your support of this vital program. Together, we can hand them the Keys to Independence.
Best wishes for a happy and healthy Holiday Season!