1 Roxanne Cogil Epilepsy Foundation of North/Central Illinois, Iowa and Nebraska IOWA SEIZURE SMART CONFERENCE OVERVIEW OF EPILEPSY FOUNDATION’S SUPPORT, SERVICES & ADVOCACY IN IOWA

EPILEPSY FOUNDATION 2 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.

LIST OF SERVICES OF EF IOWA OFFICE 3 Statewide Epilepsy Service Coordinator Statewide Community Council Individual & Family Assistance Advocacy Public and Professional Epilepsy Education Support Group Meetings Annual Epilepsy Conference Seizure Recognition and First Aid Trainings Educational Materials Quarterly E-Newsletter (The Iowa Wavelength)

IOWA COMMUNITY COUNCIL 4 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

INDIVIDUAL & FAMILY ASSISTANCE 5 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.

ADVOCACY 6 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

TOGETHER EVERYONE ACHIEVES NO MORE SEIZURES 7

ADVOCACY 8 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

SUPPORT GROUP MEETINGS 9 Ames – 2 nd Thursday every other month on the ODD months. Cedar Rapids – 2 nd Wednesday every other month on the EVEN months. Council Bluffs/Omaha – 1 st & 3 rd Tuesday every month Des Moines – 4 th Thursday every month Iowa City – 3 rd Friday every month Quad Cities – 1 st Thursday every month Sioux City – 3 rd Monday every month

COFFEE & CONVERSATION GROUP Meet once a month for coffee & rolls. Meet in the daytime Do volunteer work Go on field trips Help each other 10

ANNUAL EPILEPSY CONFERENCE 11 Hold an annual epilepsy conference every year to help educate, empower and connect families.

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 SEIZURE RECOGNITION & FIRST AID TRAININGS 12

THE IOWA WAVELENGTH 13

UPCOMING EVENTS 14 Iowa Epilepsy Advocacy Day March 20, :00 – 4:00 PM Come share your story with legislators.

PURPLE DAY FOR EPILEPSY 15 March 26 th Global Epilepsy Awareness Day

IOWA WALK FOR EPILEPSY & 5K FUN RUN 16 Presented by University of Iowa Health Care Department of Neurology & Neurosurgery April 20, :00 Registration ~ 10:30 Start Time Register at

RESOURCES 17 Epilepsy Foundation of America’s Website

RESOURCES 18 Epilepsy Foundation of North/Central Illinois, Iowa, Nebraska’s Website

RESOURCES 19 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.

RESOURCES UCB FAMILY EPILEPSY SCHOLARSHIP 20 Scholarship offers financial support to people living with epilepsy, family members, and/or caregivers who demonstrate academic and personal achievement. The Deadline is March 15 th.

RESOURCES J. KIFFIN PENRY PATIENT TRAVEL ASSISTANCE FUND 21 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.

RESOURCES Partnership for Prescription Assistance More than 2,500 brand-name and generic medications are available

RESOURCES SCHOOL NURSES TRAINING 23 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.

HELPFUL RECORD KEEPING 24 Questionnaire for family member/caregiver of a person with seizures Seizure Action Plan Seizure Observation Record Seizure Tracker

RESOURCES 25 Seizure Tracker

RESOURCES 26 ASK Resource Center

RESOURCES 27 Disability Rights Iowa

EPILEPSY THERAPY PROJECT 28

CONTACT INFORMATION 29 Epilepsy Foundation’s Iowa Office Roxanne Cogil, Iowa Service Coordinator 1111 Ninth Street, Suite 275, Des Moines, IA ~