Epilepsy Foundation of Rochester-Syracuse-Binghamton

The Epilepsy Foundation of Rochester-Syracuse-Binghamton is excited to announce that our Summer Series of education events kicks off this Thursday.  We have planned six great events all over New York.  Each event will feature a neurologist speaking on a specific epilepsy topic and a book reading and signing with Erica Dunton, author of Seven Days at Camp EAGR, a children's picture book about our camp for kids with epilepsy.

Register for the one closest to you today!

Thursday, June 24 from 5 pm to 7 pm

Strong Museum of Play, Rochester, NY

Dr. Robert Gross from the Strong Epilepsy Center will speak on Behaviors Surrounding Epilepsy.

Tuesday, June 29 from 3:30 pm to 5:30 pm

Wood Library, Canandaigua, NY

Dr. William Kingston from Ontario Neurology Associates will speak on Seizure Types and Accessing Epilepsy Services.

Tuesday, July 13 from 5 pm to 7 pm

Tompkins Public Library, Ithaca, NY

Speaker and topic to be announced.

Tuesday, July 20 from 5 pm to 7pm

Broome Public Library, Binghamton

Dr. Robert Beach from the Epilepsy Program at Upstate University Hospital will speak on New Treatments for Epilepsy.

Saturday, July 24 from 11 am to 1 pm

Utica Children's Museum, Utica

Dr. Paul Kent from the Epilepsy Program at Upstate University Hospital will speak on New Treatments for Epilepsy.

Saturday, July 31 from 11 am to 1 pm

Manlius Public Library, Manlius

Dr. Carl Crosley from the Epilepsy Program at Upstate University Hospital will speak on Epilepsy & Child Development.

Lynda Resnick, author of the national best-selling marketing book Rubies in the Orchard and entrepreneur behind POM Wonderful and FIJI Water, published an impassioned plea for bringing epilepsy out of the shadows in the Huffington Post on May 21.

Lynda led a brainstorming session with representatives from major epilepsy groups such as the National Epilepsy Foundation and Citizens United for Research on Epilepsy to develop a collective vision statement for all of the organizations working to end the stigma of epilepsy.  That vision statement is below.

"Epilepsy hijacks the lives of one in one hundred Americans of all ages. It is an indiscriminate, unpredictable, misunderstood group of ever-changing diseases that manifests itself in seizures, brain damage, and cognitive and psychiatric disabilities.

Because epilepsy is a little understood and often stigmatized disease, many patients and their families are reluctant to acknowledge their condition publicly. This affects patient care, early diagnosis, medical research, advocacy, cures - and their very lives.

With recent advances in brain research, our time is now. The only thing standing between us and a cure is awareness and funding. It is time to come out of the shadows and join our cause."

 Read the full article here.

Camp EAGR is August 15–21 and registration is officially open!

Camp EAGR is the Epilepsy Foundation of Rochester-Syracuse-Binghamton’s weeklong overnight camp for children and teenagers, ages 8–17, with epilepsy. It is located at the YMCA’s Camp Weona, just outside of Warsaw, N.Y. It’s a great opportunity for children to participate in activities such as swimming, horseback riding, canoeing and arts and crafts. Along with approximately 30 qualified counselors, Camp EAGR also has a neurologist and 2–3 registered nurses who remain at camp the entire week. The cost is $400 and financial aid is available.

Learn more about Camp EAGR here or check out lots of Camp photos here.

If you have specific questions or you would like to register, please contact Camp Director Mike Radell at (800) 724-7930 , or (585) 442-4430 ext. 2702, or mradell@epilepsy-uny.org.

Trent, was born a healthy baby boy on August 1, 2008.  When he was 3 months old, his parents noticed that Trent would stare into space and go completely still.  This was the beginning of a journey that would take this family through 2 surgeries and many, many medication changes. Trent and his parents, while they are still battling seizures, are optimistic that one day Trent's seizures will be under control.

This is their story. 

The Hickok Center for Brain Injury hosts a free Brown Bag Educational Panel entitled “The Brain – Living With Epilepsy” on Monday, March 29, 2010 at their Rochester Center located at 114 South Union Street, Rochester, NY 14607 from 11:30 a.m. - 1 p.m.

The panel will feature: J. Craig Henry, MD, Assistant Professor of Neurology, Strong Epilepsy Center; A. James Fessler, III, MD, Assistant Professor of Neurology at University of Rochester and Director of Clinical Research and Assistant Director, Strong Epilepsy Center; and, our very own Michael Radell, Community Educator & Camp EAGR Director, Epilepsy Foundation of Rochester-Syracuse-Binghamton.

This is the first of four brown bag educational events the Hickok Center will host throughout 2010. Bring your lunch and learn about the medical and social issues of living with epilepsy. If you or someone you love has epilepsy, here is an opportunity to learn and ask questions of area professionals. Lot and street parking available.

Reservations strongly suggested as seating is limited. To make a reservation, please call (585) 271-8640 x207 or email ghewson@hickokcenter.org to reserve a seat.

Below are some great web resources for indivdiuals with epilepsy and other disabilities:

www.ABILITYJobs.com

ABILITYJobs.com is web-based employment resource for people with disabilities. The goal of ABILITYJobs and JobAccess is to enable people with disabilities to enhance their professional lives by providing a dedicated system for finding employment.

www.ABILITYMagazine.com

ABILITY Magazine is a magazine that focuses on disability issues. They are an award-winning publication, distributed by Time-Warner, with a combined online and print readership of more than one million. For nearly 20 years, their mission has been to provide new insights into individual levels of ability. From Diabetes to Spinal Cord Injury and celebrity interviews to CEO profiles, ABILITY covers the latest on Health, Environmental Protection, Assistive Technology, Employment, Sports, Travel, Universal Design, Mental Health and much more. Our writers include MDs, PhDs, JDs, best-selling authors, U.S. Senators and advocates. Cover interviews consist of Movie Stars, TV Celebrities, U.S. Presidents, First Ladies and more.

www.ABILITYAwareness.org

ABILITY is a non profit organization dedicated to building a world of inclusion for people with health conditions and disabilities through housing, employment, education, media and volunteer opportunities.

The MediKidz cartoon, developed by doctors, explains epilepsy in a very engaging way.  The cartoon uses superheros to provide children with information about the body and epilepsy in an empowering way. The video is designed for kids, ages 10 to 15. 

Check it out!

Let's put our brains together to support brain research.

This is the mantra of the 2010 Neuro Film Festival, a contest held by the American Academy of Neurology Foundation to help raise awareness about brain disorders and the need to support research into preventions, treatments, and cures.

The American Academy of Neurology encourages patients of all brain disorders, epilepsy, Alzheimer's, Parkinson's, and others, to make a video about their experiences. These videos are inspiring and heartbreaking. They range from a child discussing the devastating effects of Alzheimer's to parents discussing how they made the decision for their child to have brain surgery.

Check them out on the Neuro Film Festivals YouTube Channel

Epilepsy Foundation YouTube Video

The Dewitt police (Syracuse, NY) have made epilepsy education an priority. Non-convulsive seizures can often look like mental illness or substance abuse. It's extremely important for first responders, like the police department, to be aware of these types of seizures, so they can respond appropriately and provide the correct type of first aid if necessary.

Way to go to our Syracuse Community Educator for providing this excellent training! Check out the full article on Cnylink.com