Supporting the Epilepsy Community
For parents of adult children with disabilities, there are scarce resources that provide independent living. For parents of adult children with severe epilepsy, those resources are even scarcer. Those living with seizure disorders can be isolated, yet they want to be as independent as possible — and parents worry about who will help their adult children when they are gone.
Like many advocates for people with epilepsy, Debbie Flader’s passion stemmed from her own personal experience — her devotion to her daughter Noel, who was diagnosed with epilepsy in 1992, when she was just eight years old. With Noel’s seizures worsening and resulting traumatic brain injuries, her mobility was limited to a wheelchair, and Debbie knew Noel would need help living independently.
Debbie founded the Angel Wings Foundation in 2012 with a mission to enhance the lives of adults with epilepsy through independent living in the community. Debbie is also the director of clinical outreach at the Epilepsy Foundation of Chicago, and is co-founder of CURE, Citizens United for Research in Epilepsy, the largest funder of epilepsy outside the government.
The Angel Wings Foundation’s goal is to create a new housing model to build and create homes with support in place where people with epilepsy can by happy, safe, and independent. To create an exceptional quality of life in a shared community, the services will include:
- Support care for various levels of need
- Life skills development and training
- Case management services
- Therapeutic services
- Individualized person-centered programming to promote independence
- Opportunities for supported employment
- Opportunities for individuals to be involved in communities
- Evening and weekend outings
- Opportunities for education — art, Yoga, language, etc.
The Angel Wings Foundation is holding a fundraising event; Spread the Hope for Epilepsy, on April 7 in Chicago. The event will raise money to purchase property and begin the first phase in their vision to create independent living for adults with epilepsy.
The team from Lifelines met Debbie at the December American Epilepsy Society meeting and had the opportunity to learn first-hand about her goal to provide independent housing. Lifelines was pleased to help support the event with a donation, to help make that dream a reality.
For tickets and further and information please visit their website here.
LEFT: Noel Flader, inspiration for the Angel Wings Foundation.
The annual Victory Over Epilepsy Gala was sponsored by The Epilepsy Foundation of Missouri on March 3, 2018 in St. Louis. Marco Moreno, VP of Sales, and his wife, Anna, attended the event to represent Lifelines and were able to network with foundation staff, as well as physicians and epilepsy patients. Marco shared that one of the most satisfying parts of the evening was the opportunity to sit with a family whose daughter had undergone brain surgery for seizures.
“It is a great reminder that we play an important role in patients’ lives,” says Marco.
RIGHT: Marco and Anna Moreno at the Victory Over Epilepsy Gala.