roxanne cogil epilepsy foundation of north/central illinois, iowa and nebraska

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Roxanne CogilEpilepsy Foundation of North/Central Illinois, Iowa and Nebraska

IOWA SEIZURE SMART CONFERENCEOVERVIEW OF EPILEPSY FOUNDATION’S

SUPPORT, SERVICES & ADVOCACY IN IOWA

EPILEPSY FOUNDATION

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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

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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

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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

INDIVIDUAL & FAMILY ASSISTANCE

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• 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

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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

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ADVOCACY

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• 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

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• 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

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

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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

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THE IOWA WAVELENGTH

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UPCOMING EVENTS

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Iowa Epilepsy Advocacy Day

March 20, 20132:00 – 4:00 PMCome share your story with legislators.

PURPLE DAY FOR EPILEPSY

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March 26th Global Epilepsy Awareness Day

IOWA WALK FOR EPILEPSY & 5K FUN RUN

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Presented by University of Iowa Health Care Department of Neurology & Neurosurgery

April 20, 20139:00 Registration ~ 10:30 Start Time

Register at www.efwalk.org

RESOURCES

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Epilepsy Foundation of America’s Websitewww.efa.org

RESOURCES

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

www.epilepsyheartland.org

RESOURCES

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Camp Oz Camp Scholarship

Scholarships available to send Iowa youth to epilepsy camp in Camp Oz in Hudson, Wisconsin.

Application deadline is April 30th.

RESOURCES UCB FAMILY EPILEPSY SCHOLARSHIP

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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.

RESOURCES J. KIFFIN PENRY PATIENT TRAVEL ASSISTANCE FUND

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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 AssistanceMore than 2,500 brand-name and

generic medications are available.

1-888-477-2669

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RESOURCES SCHOOL NURSES TRAINING

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Managing Students with Seizures: A Training for School Nurses is an accredited continuing education training program designed to provide the school nurse withinformation, 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

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• Questionnaire for family member/caregiver of a person with seizures

• Seizure Action Plan

• Seizure Observation Record

• Seizure Tracker

RESOURCES

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Seizure Tracker

www.seizuretracker.com

RESOURCES

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ASK Resource Center

www.askresource.com

RESOURCES

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Disability Rights Iowawww.disabilityrightsiowa.org

EPILEPSY THERAPY PROJECT

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www.epilepsy.com

CONTACT INFORMATION

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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