IOWA SEIZURE SMART CONFERENCE
OVERVIEW OF EPILEPSY FOUNDATION’S
SUPPORT, SERVICES & ADVOCACY IN IOWA
Roxanne Cogil
Epilepsy Foundation of North/Central Illinois, Iowa and Nebraska
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EPILEPSY FOUNDATION
The Epilepsy Foundation of North/Central Illinois, Iowa, and
Nebraska will ensure that people with seizures are able to
participate in all life experiences and will prevent, control and
cure epilepsy through services, education, advocacy and
research. They also improve the lives of people with
disabilities in Iowa through a wide range of programs, such as
employment services, education programs, prevention
initiatives, support services and much more. The Epilepsy
Foundation of North/Central Illinois, Iowa, and Nebraska is an
independently incorporated affiliate of the National Epilepsy
Foundation.
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LIST OF SERVICES OF EF IOWA OFFICE
Statewide Epilepsy Service Coordinator
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Statewide Community Council
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Individual & Family Assistance
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Advocacy
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Public and Professional Epilepsy Education
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Support Group Meetings
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Annual Epilepsy Conference
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Seizure Recognition and First Aid Trainings
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Educational Materials
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Quarterly E-Newsletter (The Iowa Wavelength)
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IOWA COMMUNITY COUNCIL
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Sharon Benson, West Des Moines
Patsy Bratton, West Des Moines
Nate Burnham, Ankeny
Annette Burnham, Ankeny
Robert Coons, Iowa City
Tina Johnson, Des Moines
Mike Kosikas, Cedar Rapids
Dr. A. LeBron Paige, Iowa City
Courtney Strutt-Todd, Des Moines
Dale Todd, Cedar Rapids
Kristin Wells, Cedar Falls
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INDIVIDUAL & FAMILY ASSISTANCE
• Information & Referral - Help direct people to resources
to improve their quality of life.
• Adults – Common challenges are with employment,
transportation, housing and medical challenges.
• Children – Common challenges are with Seizure Action
Plans, IEPs and medical challenges, especially the wait
lists to see a pediatric neurologist or an epileptologist.
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ADVOCACY
Iowa Epilepsy Treatment & Education Task Force
• Drug product selection relative to antiepileptic drugs
for the treatment of epileptic seizures.
• 3 Pharmacists, 3 Neurologists, 3 Family Members
• Epilepsy Patient Safety Bill
• Educational Seizure Control Flyer
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TOGETHER EVERYONE ACHIEVES
NO MORE SEIZURES
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ADVOCACY
• Main source of funding is through the state.
• Write your legislators, share your story, ask them to
support epilepsy services in Iowa.
• Also advocate in public forums
• Governor Branstad’s Public Budget Meeting
• Healthcare Reform Stakeholders Meeting
• Medicaid P & T Meeting
• Senate Sub-Committee Meeting
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SUPPORT GROUP MEETINGS
• Ames – 2nd Thursday every other month on the ODD
months.
• Cedar Rapids – 2nd Wednesday every other month on the
EVEN months.
• Council Bluffs/Omaha – 1st & 3rd Tuesday every month
• Des Moines – 4th Thursday every month
• Iowa City – 3rd Friday every month
• Quad Cities – 1st Thursday every month
• Sioux City – 3rd Monday every month
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COFFEE & CONVERSATION GROUP
• Meet once a month for coffee & rolls.
• Meet in the daytime
• Do volunteer work
• Go on field trips
• Help each other
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ANNUAL EPILEPSY CONFERENCE
Hold an annual epilepsy conference every
year to help educate, empower and connect
families.
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SEIZURE RECOGNITION & FIRST AID TRAININGS
• Managing Students with Seizures: A Training for School
Nurses
• Seizure Training for School Personnel
• Take Charge of the Facts (High School students)
• Take Charge of the Storm (Middle School students)
• Seizure Training for Law Enforcement
• Seizure Training for First Responders
• Seizure Training for Day Care Centers
• Other Customized Seizure Trainings
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THE IOWA WAVELENGTH
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UPCOMING EVENTS
Iowa Epilepsy Advocacy Day
March 20, 2013
2:00 – 4:00 PM
Come share your story with legislators.
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PURPLE DAY FOR EPILEPSY
March 26th
Global Epilepsy Awareness Day
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IOWA WALK FOR EPILEPSY & 5K FUN RUN
Presented by University of Iowa Health Care
Department of Neurology & Neurosurgery
April 20, 2013
9:00 Registration ~ 10:30 Start Time
Register at www.efwalk.org
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RESOURCES Epilepsy Foundation of America’s Website
www.efa.org
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RESOURCES
Epilepsy Foundation of North/Central Illinois,
Iowa, Nebraska’s Website
www.epilepsyheartland.org
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RESOURCES
Camp Oz Camp Scholarship
Scholarships available to send Iowa youth to
epilepsy camp in Camp Oz in Hudson,
Wisconsin. Application deadline is April 30 th.
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RESOURCES UCB FAMILY EPILEPSY SCHOLARSHIP
Scholarship offers financial support to
people living with epilepsy, family
members, and/or caregivers who
demonstrate academic and personal
achievement.
The Deadline is March 15th.
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RESOURCES
J. KIFFIN PENRY PATIENT TRAVEL
ASSISTANCE FUND
Travel scholarships are available to individuals who have
to travel more than 50 miles from their home to receive
FDA-approved medical care and/or treatment for their
epilepsy/seizure disorder, but lack adequate financial
resources to meet the cost of this travel without bearing
financial hardship.
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RESOURCES
Partnership for Prescription Assistance
More than 2,500 brand-name and
generic medications are available.
1-888-477-2669
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RESOURCES SCHOOL NURSES TRAINING
Managing Students with Seizures: A Training for School
Nurses is an accredited continuing education training
program designed to provide the school nurse with
information, strategies and resources that will enable
him/her to better manage the student with seizures by
supporting positive treatment outcomes, maximizing
educational and developmental opportunities and ensuring
a safe and supportive environment.
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HELPFUL RECORD KEEPING
• Questionnaire for family member/caregiver of a
person with seizures
• Seizure Action Plan
• Seizure Observation Record
• Seizure Tracker
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RESOURCES
Seizure Tracker
www.seizuretracker.com
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RESOURCES
ASK Resource Center
www.askresource.com
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RESOURCES
Disability Rights Iowa
www.disabilityrightsiowa.org
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EPILEPSY THERAPY PROJECT
www.epilepsy.com
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CONTACT INFORMATION
Epilepsy Foundation’s Iowa Office
Roxanne Cogil, Iowa Service Coordinator
1111 Ninth Street, Suite 275, Des Moines, IA 50314
515-238-7660 ~ efiowa@efncil.org
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