Education Matters | Changing Lives Through Epilepsy Awareness at JoshProvides

By Reno Gomez | April 2025

Joshua Chapnick was 16 years old when his battle with epilepsy began in 1996. He experienced his first tonic-clonic seizure, previously known as grand mal, while traveling with his high school teammates to a varsity soccer game. He was later diagnosed with epilepsy. Though little was known about the diagnosis at the time, it would change the trajectory of Josh’s life, and that of his family.

His parents, Sandi and the late Bruce Chapnick, founded JoshProvides Epilepsy Assistance Foundation in 2008 to pay tribute to Josh, and to provide resources and information about epilepsy. “Although epilepsy will affect one of every 26 people in their lifetime, making it the fourth most common neurological disorder, much of the same stigma that Josh faced following his diagnosis is still felt today,” stated Sandi. “The key to dismantling any internalized stigma is knowledge, and as Sarasota’s own ‘purple resource’, JoshProvides educates and supports not only those diagnosed with epilepsy, but their families, and communities as well.”

With over 40 different types of seizures, and no known cure at this time, treatment and medication can vary from person to person. JoshProvides has public speakers available to present at schools, workplaces, churches, clubs, and associations. These speakers provide the most up to date information on seizure first aid response and educate to dispel common misconceptions and myths about epilepsy. To arrange for a speaker, contact JoshProvides at Info@JoshProvides.org.

“There are really five things we stress to those who come to us after being diagnosed. The first is to develop a seizure action plan on paper so the people around them know what they should be doing. Then, they must educate those around them, build a support system, and join support groups,” said Andria Bilan, JoshProvides CEO since 2017.

JoshProvides sponsors a bi-monthly virtual epilepsy support group on the first and third Tuesdays of the month. One session is open mic, allowing participants to share concerns, challenges, achievements, and ask questions in a safe environment. The other session features a resource speaker that offers information on medical treatments, community resources, advances in the field, personal care advice, and how to avoid seizure triggers.  Monica Caldwell, JoshProvides Client Care Manager noted, “The goal of the group is to keep people connected, break down the stigma associated with epilepsy, and combat the social isolation experienced by people living with epilepsy.”

“We encourage individuals not to let their diagnosis define who they are. While it is a game changer, it does not mean they are incapable,” said Bilan. “Our families are true warriors!” 

JoshProvides was established as a 501(c)(3) non-profit organization in 2013. As Bilan was brought on as the first CEO, the organization was no longer just the legacy of Josh by his parents, but an invaluable resource to the community. Expanding of resources and grants has allowed for funding of seizure alert devices for individuals, and financial assistance for training seizure response dogs.

As epilepsy is a chronic neurological disorder, it can impact several important aspects of a person’s life, including their ability to drive. After experiencing a seizure, a person must be six-month seizure free to regain their driving privileges. 

For transportation and travel assistance for diagnostic testing and qualifying safety items, JoshProvides offers the Medical Services and Transportation & Travel grant. Just last year, JoshProvides received 1,288 inquiries for assistance, awarding 290 grants for a total of $117,460. This was a significant increase over the 246 grants, totaling $86,882, awarded in the prior year, and that number is anticipated to increase in 2025. 

JoshProvides’s goal is to assist local families and individuals who reside in these local Florida counties: Sarasota, Manatee, Charlotte, Collier, Dade, Desoto, Hardee, Hillsborough and Pinellas. Applications will be accepted from other areas within Florida and throughout the country. For questions regarding eligibility, call 800-706-2740. 

Tragically, Josh passed away on June 18, 2008, less than two weeks before his 29th birthday. His legacy lives on through the ongoing efforts of the JoshProvides team, and the community they serve. To support their ongoing mission to provide in his memory, JoshProvides offers events and opportunities throughout the year for the community to get involved. 

The 7th Annual Interactive Dinner & Auction is the signature fundraising event for JoshProvides and will be hosted by Michael’s on the East on April 16th. Proceeds from this event sponsor the children and families who turn to JoshProvides for help and hope following an epilepsy diagnosis. Tickets are available online at www.joshprovides.org/upcoming-events.

Donations for the cause can be made directly through the JoshProvides website, or through social media fundraising campaigns. Ambassador opportunities are also available for those who wish to host an outreach event for JoshProvides to spread the word about epilepsy, and available programs and services.

JoshProvides celebrates purple warriors on International Epilepsy Day in February, Purple Day on March 26th, and Epilepsy Awareness Month in November. The annual Chase Away Epilepsy Walk at GT Bray Park in Bradenton will be held on November 1, 2025.

FOR MORE INFORMATION on JoshProvides, please visit joshprovides.org.