Heading the Epilepsy Foundation of Greater Chicago (EFGC) became a personal mission for longtime activist and consultant Alicia T. Vega this past winter. Vega’s wife, Sofia G. Sarabia, a stroke survivor, was diagnosed with epilepsy in February.
Just a month before, Vega had been named to her job as EFGC’s interim president and CEO.
“The world works in mysterious ways,” said Vega. “It is profound and quite spiritual to me that I have been placed in this role while witnessing my wife Sofia’s journey with this new diagnosis. As an executive leading EFGC, I gain access to information to help my wife navigate this new reality. I am also understanding the effects of epilepsy from the eyes of my wife. Her experience informs me as I lead, and my leadership role informs us while navigating her care.”
Vega and Sarabia have been a couple for many years, and were married on May 25, 2014, at Wesley United Methodist Church in Cicero.
Many people working at EFGC live with epilepsy, Vega said, explaining that their shared experiences create a “dynamic culture” for their workplace.
Vega recalled a recent presentation focused on how epilepsy affects comorbidities, psychological health and death rates, recalling that it was “very difficult” for her to hear this information. She realized that, for staff members with epilepsy, it must have been “significantly more difficult to process.” Vega’s mission is to “develop a culture of care and support for staff that recognizes these dynamics, and creates psychological safety for all who work at EFGC.”
On Vega’s first day at EFGC, she was open about her lesbian identity, letting “LGBTQ+ staff, members and community partners know that EFGC supports those who are LGBTQ+.”
One of the EFGC members, Public Defender’s Office intern and law student Samantha Myers-Dineen, who is bisexual, said it means a lot knowing that Vega is a fellow queer person. “Representation can foster both self-belief and an understanding of intersectionality that would otherwise be difficult,” said Myers-Dineen. “Having queer people in positions of power means they themselves can create the change needed in our society for underrepresented groups.”
Myers-Dineen was diagnosed with epilepsy as a teenager, ending her all-state soccer career. She cannot operate any vehicle, and has had to restructure her sleep patterns so she does not get tired or stressed, since those are epilepsy triggers. She became an EFGC member in May 2023, during her second year of law school, when her mental health plummeted due to her epilepsy struggles. Myers-Dineen meets with her case manager each month and is enrolled in the EFGC counseling program in case she needs it.
“I am still the happy, optimistic person I was before my diagnosis,” she said. “Having a disability does not have to preclude you from achieving what you want.”
For pansexual clinician Karli Paggeot, having Vega at the helm has been valuable for many reasons. Paggeot believes a diverse staff is vital for any organization making room “for creative ideas from individuals of all walks of life. Alicia nurtures that welcoming environment by supporting open communication and remaining inquisitive regarding EFGC’s mission and values … Her competence, work experience and personal affiliation with the queer community enables her to pave the way towards compassionately addressing barriers towards care that many of our clients with epilepsy face.”
LGBTQ+ ally and EFGC Vice President of Health Equity, Education and Advocacy Ayesha Akhtar said EFGC’s goal is to tackle systemic issues and promote equitable access to epilepsy care via collaborative efforts with organizations and advocacy groups. Her department’s primary mission is serving “marginalized communities, including those who identify as LGBTQ+, within the epilepsy community.”
Akhtar noted, “We recognize and understand the unique barriers these individuals face in accessing healthcare and support services. By acknowledging and addressing these challenges, we strive to create inclusive and affirming spaces not only within the programs and services offered by EFGC, but also within the broader provider network.”
Vega wants anyone affected by epilepsy to be able to access resources from the organization as they “travel this journey of life with epilepsy,” she said.
One of the ways EFGC has broadened its reach is with the organization’s first Epilepsy Spring Fest 5K this past May 4 in Jackson Park. Sarabia was among the participants. She did the 5K walk and was the top fundraiser for the event.
In a statement to Windy City Times, Sarabia said, “I advocate for epilepsy awareness since epilepsy itself has been misunderstood over the centuries. The word epilepsy means ‘to seize’ or ‘to possess.’ From ghosts and demons to now, stigmatized and discriminated against epilepsy. Epilepsy is a neurological condition involving the brain causing people to have recurrent unprovoked seizures. All ages, races and ethnic backgrounds can have epilepsy.
“I was diagnosed with epilepsy on February 9, 2024. I had a stroke on July 20, 2021, which left me in a coma that resulted in the paralyzation of the right side of my body to ongoing rehabilitation efforts with positive outcomes. 10% to 13% of adults stroke survivors went on to be diagnosed with epilepsy. That is me. I developed post-stroke epilepsy.”
Vega said attending the 5K was significant for her as well. She noted that this year’s tee-shirt colors red, black and green—the Pan-African flag colors—highlighted the Black heritage of the South Side of Chicago, Jackson Park and the surrounding neighborhoods. More than 300 people participated, and EFGC raised over $20,000
EFGC will host a Health Equity Roundtable series this summer focused on centering community perspectives on issues such as healthcare access, patient self-advocacy and the lifecycle of women with epilepsy.
This Pride Month, EFGC will conduct a Seizure Recognition and First Aid Certification Training for the ALPHA LGBTQ Health Caucus on June 4. EFGC will also march in this year’s Aurora’s Pride Parade on Sunday June 9. All supporters are welcome to participate. Visit EFGC’s Aurora Pride Parade page for more information and to register.
Additionally, EFCG will host its annual fundraiser Back to the 90’s on Thursday June 20 at Revel Motor Row, 2400 South Michigan Ave. near Chicago’s McCormick Place from 8-11 p.m.