RESOURCES

Epilepsy Websites

• www.accreditedschoolsonline.org/resources/chronic-conditions-in-school/ - Guidebook for students with chronic health conditions
• www.akfus.org - The Anita Kaufmann Foundation - Educating the public not to fear epilepsy and seizures.
• www.aesnet.org - American Epilepsy Society - Promotes research and education for professionals dedicated to the prevention, treatment and cure of epilepsy
• www.cdc.gov/epilepsy/basics/sudep/ - CDC information on Sudden Unexpected Death in Epilepsy (SUDEP)
• www.Epilepsy.com - Provides in-depth information for people living with epilepsy and seizures
• www.epilepsy.com/learn/impact/mortality/sudep/sudep-faq - Information from the Epilepsy Foundation on SUDEP
• www.epilepsyfoundation.org – Epilepsy Foundation of America
• www.epilepsysociety.org.uk/professor-martin-elliott-stresses-importance-research-sudep#.WJTJcmffPPQ - Article about SUDEP
• www.expertise.com - Home Remodeling for Disability and Special Needs: What You Need to Know"
• www.hopkinsmedicine.org/neurology_neurosurgery/ - Johns Hopkins Medicine – The Epilepsy Center
• www.joshprovides.org - Josh Provides Epilepsy Assistance Foundation
• www.mayoclinic.com - Mayo Clinic
• www.medlineplus.gov/epilepsy.html - U.S. National Library of Medicine Drug Information Database
• www.ninds.nih.gov/Disorders/All-Disorders/Epilepsy-Information-Page - National Institute of Neurological Disorders and Stroke
• www.Purpleday.org - Purple Day, March 26th, is an international effort dedicated to increasing awareness about epilepsy worldwide.
• www.sudep.org - Good website for anyone who has lost a loved one to SUDEP
• www.WebMD.com - Provides credible health information
• www.wristband.com/content/epilepsy-awareness-resources-guide  - Information on wristbands

Epilepsy Support Groups, Lending Libraries and Epilepsy Resource Center

• Epilepsy Services of SW Florida (Sarasota Support Groups Are Currently Not Meeting Due to COVID) - Monthly support group meetings are usually held each month from 6:00 to 7:30pm at the Sarasota Senior Friendship Center, 1920 Brother Greenen Way, Rubin Center for Healthy Aging in the Dwyer Room.  Please contact Barbara Coleman, Executive Director, at (941) 953-5988 or by email bcoleman@esswfl.org for more information.
• Josh Provides Epilepsy Support Group (Sarasota) - All Meetings Temporarily Postponed Due to COVID-19. Monthly meetings are usually  held the first Tuesday of each month from 6:30 to 8:00pm at Perkins Restaurant located at Fruitville Road and Cattlemen in Sarasota. A different location is planned during the coming months.
• Contact: Sandi Chapnick, sandi@joshprovides.org or call 800-706-2740 for Josh Provides Support Group Information.
• Southwest Florida Epilepsy Support Group (Naples) – Monthly Support Group every 2nd Wednesday of the month at 7PM in the Greater Naples YMCA, 5450 YMCA Road, #100, Naples, FL 34109 (Large Volpe Conference Room). For more information, contact Dan Rosenfeld 239-348-5155 or drosenfeld@efof.org
• Epilepsy Services Resource Libraries (Sarasota and Fort Myers Officies) - Each library consists of about twenty books on the varied facets of epilepsy. Some books are for children, others are for family members, some deal with epilepsy specifically in women, and others still address personal stories of recovery. The lending libraries were the idea of Cassidy Marino, a high school senior in Fort Myers.  Cassidy raised the money for the libraries to help provide assistance in the pursuit of a healthy, happy life.
• Epilepsy Resource Center - Located in the Greater Naples YMCA 5450 YMCA Road, Naples, FL 34109

EpilepsyU.com - A website for epilepsy education, news, support

EpilepsyStore.com - An on-line store for epilepsy related jewelry, assistive products, etc

Epilepsy Center at Sarasota Memorial Hospital (Support Groups Currently Not Meeting)

Cutting Edge Epilepsy & Seizure Disorder Services

Sarasota Memorial offers one of Florida's leading centers for the evaluation and treatment of seizure disorders and epilepsy. The goal at the Epilepsy Center of Sarasota Memorial is complete control of seizures so that our patients may reach their full potential.

The Center's program encompasses:

• In-patient and out-patient evaluation and treatment
• Testing facilities
• Inpatient epilepsy monitoring
• Epilepsy surgery with brain mapping
• Clinical research and trials to better delineate the optimal use of current treatment options and to test promising new treatments

Location: Sarasota Memorial Hospital, 1700 S. Tamiami Trail, Sarasota, Florida
Contact: (941) 906-7155

Currently, Sarasota Memorial Hospital does not offer Epilepsy Support Groups.

SUDEP Sudden Unexplained Death in Epilepsy Articles

1. Access World News
US Fed News (USA)...2017-06-11
WIPO PUBLISHES PATENT OF NEW YORK UNIVERSITY FOR "IDENTIFICATION OF EPILEPSY PATIENTS AT INCREASED RISK FROM SUDDEN UNEXPECTED DEATH IN EPILEPSY" (AMERICAN INVENTORS) 
... developing sudden unexpected death in epilepsy ( SUDEP ) comprising determining the presence or absence ...

WIPO Publishes Patent of New York University for "Identification of Epilepsy Patients at Increased Risk from Sudden Unexpected Death in Epilepsy" (American Inventors)

2. Sun, The (Lowell, MA)...2017-06-04
Harmful 'Fail first' health-care policies must end 
... in death. Sudden unexpected death in epilepsy ( SUDEP ) occurs each year in more than 1 in 1,000 ... patients with uncontrolled seizures, the risk of SUDEP increases to more than 1 out of 150. These facts ...

Epilepsy Articles

• A Brain Misfire, North Port Sun, November 4, 2017
• Unmasking Silent Killer in Epilepsy, New York Times, July 26, 2010
• Jon Meacham: Epilepsy in America: What Needs to be Done, from Newsweek magazine
• Jon Meacham: A Storm in the Brain from Newsweek magazine
• Jon Meacham: One Hundred & One Questions & Answers about Epilepsy (2016), Tampa, Florida

First Aid Procedures

Generalized Tonic-Clonic Seizure - (Grand Mal):

• Speak calmly and reassuringly
• Turn on side to keep airway clear
• Do not restrain a person
• Look for medical identification
• Remove hazards such as furniture, glasses
• Cushion person’s head
• Loosen neckwear
• Do not put anything in the person’s mouth
• Do not give liquids
• Time the seizure

Complex partial seizure – (Petit Mal):

• Do not restrain
• Speak calmly and reassuringly
• Gently lead away from danger
• Remain with person until completely aware of surroundings

When to Call EMS:

• First time seizure
• Person is diabetic or pregnant
• Person is injured
• Second seizure occurs shortly after initial seizure