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.

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!

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

Do you have epilepsy and are a senior in high school?  Considering college?  There is a scholarship program at the Epilepsy Foundation of Rochester-Syracuse-Binghamton you have to check out.

Stephen A. Segar created this scholarship program in 2007 because he believes that epilepsy should not stop anyone from achieving their dreams.  Epilepsy certainly didn't stop him -- Steve Segar is a successful lawyer, a founding partner of Segar & Sciortino, and a board member of the Epilepsy Foundation of Rochester-Syracuse-Binghamton.

Visit our Scholarship Page for more details and the application forms.  Applications are due April 30, 2010.

UCB, a pharmaceutical company, is also offering a scholarship program.  This program is for individuals with epilepsy and family members or caregivers.  For more details, visit their scholarship page.  Applications for the UCB Scholarship are due April 23, 2010.

On Sunday, October 25th the CBS news program 60 Minutes featured story on epilepsy. The segment will profile Susan Axelrod and her family. The National Epilepsy Foundation worked with the producers providing video and the National PAB provided medical information on issues such as the relationship of TBI and epilepsy.

Click here to read the story and watch the video.

Know the Difference was created by the National Epilepsy Foundation to respond to the growing number of African-Americans living with epilepsy. An estimated 350,000 African Americans have epilepsy, and nearly 24,000 new cases are diagnosed each year.  Get the facts. Know the difference.

A few months ago, the National Office of the Epilepsy Foundation had the opportunity to work with PhRMA and contribute to their nationally-televised public affairs show,"Sharing Miracles." Danny Glover was the featured guest and he discussed his childhood history with seizures.

To read more of Danny Glover's story, click here.

Ortho McNeil Neurologics has teamed up with the National Epilepsy Foundation to produce a series of podcasts about epilepsy titled Speaking Out for Epilepsy.  Among the guests are Alan Faneca, NFL football player; Hapa, one of Los Angeles' leading disc jockeys and musical artists; and Dr. James Valeriano, a neurologist with Allegheny General Hospital in Pittsburgh. The podcast can be found on iTunes.

Click here for more information.