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Epilepsy Foundation of DeKalb battles dried-up funds

DeKALB – Jeanette Johnson’s daughter, Grace, was diagnosed with epilepsy when she was 3, and now, 12 years later, the community resource that Johnson and her family have come to rely on could be at risk of losing its home.

Johnson volunteered for the Epilepsy Foundation of North Central Illinois long before she began working part time as the service coordinator for the DeKalb office at 303 Hillcrest Drive. This year, the DeKalb office is looking to the community to help it make ends meet because of significant state budget cuts the office said it didn’t know about.

Veronica Garcia-Martinez, the director of DeKalb services and the only full-time employee, said the office found out in July it wouldn’t be getting the funding it has been counting on for the past five years.

“When we found out that we were not getting the grant, we were all pretty shocked and very much focused,” Garcia-Martinez said. “We’ve been getting this funding for the past five years without any problems, and we filled out the grant virtually the same way each and every year.”

The foundation usually receives between $400,000 and $500,000 from a state grant called the Epilepsy Program 250 Grant, but this year, Garcia-Martinez said it received nothing. The group also receives $30,000 from the DeKalb County Mental Health Board each year, dispersed monthly.

Earlier this week, the DeKalb office went to social media to find help for a $644 shortfall in rent this month. And on Friday, Johnson was laid off after having her hours cut back three weeks ago.

She said she will continue to work as a volunteer at the foundation.

An anonymous donation made sure the office had rent for September and some of October, but the financial crisis continues.

The Epilepsy Foundation of North Central Illinois was supposed to get $500,000 from the state this year, with the DeKalb office’s share being $79,000, Garcia-Martinez said. This year, however, there was no money from the state.

The DeKalb office rent costs $950 a month. Other monthly expenses include $500 a month for transportation, which Garcia-Martinez said is imperative to DeKalb County since many clients face transportation limitations.

Johnson said the office has applied for a community-needs grant through the DeKalb County Community Foundation but has not yet heard back.

Garcia-Martinez said the only difference in the application this year for state funds was a change in the number of clients. She said the DeKalb office serves 81 clients with epilepsy, with more than 400 clients who receive additional support services.

There are about 4,000 people in The county living with epilepsy, according to the foundation, and one in 26 people will receive an epilepsy diagnosis, while one in 10 people will suffer from a seizure in their lifetime. A third of those diagnosed with epilepsy have strains of the disease that cannot be treated with medication, Garcia-Martinez said. As the only full-time employee, Garcia-Martinez handles all the case management and transportation services for clients, and during the fiscal 2019 drove more than 11,000 miles to get patients to their doctor’s appointments, she said. Johnson ran teen and children programming.

The foundation provides services for individuals ages 3 and older who have been diagnosed with epilepsy or who have seizure episodes, and also provides support resources for family members of anyone affected by the disease, according to the website. They offer a children’s homework and social support group each Tuesday, a family support group and teen girls group once a month and a junior ambassador program that encourages those with epilepsy to speak candidly about their experiences. The DeKalb office also has educational trainings for teachers, social service providers, employers, community organizations and anyone wishing to learn more about advocacy.

She said epilepsy often can come with a stigma attached, and the Epilepsy Foundation does not receive the same level of support or awareness as other organizations in the county. Clients in the county who don’t have private health insurance often aren’t able to see a doctor at Northwestern Medicine Kishwaukee Hospital, Garcia-Martinez said.

“We get little to no help from the local community,” Garcia-Martinez said. “We host countless fundraisers each year and struggle to make our $8,000 yearly fundraising goal. It is like pulling teeth. We have a council of eight community members helping us, and none of us has been successful.”

For Johnson and her daughter, Grace, DeKalb epilepsy services have been life-changing.

“Some clients have referred to the office as their safe haven,” Johnson said. “The work we have done with the kids and teens have opened their eyes to bigger and better dreams. They don’t let epilepsy control their life.”

Source: The Daily Chronicle

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