Epilepsy Foundation of Rochester-Syracuse-Binghamton

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!

Take Action!

Urge your Senators to cosponsor S. 2860 and your Representative to cosponsor H.R. 4247: "The Preventing Harmful Restraint and Seclusion in Schools Act".

This new bill in Congress has been endorsed by the Epilepsy Foundation. The National Epilepsy Foundation is asking everyone to join in a National Call-in Day on Friday, February 26th to ask your Senators and Representative to cosponsor this legislation.

• Call your Senators and Representative via the Capitol Switchboard at 202-224-3121.
• Ask for the offices of your US Senators and Representative (you may have to call the swithboard for each call)
• Ask to speak to the staff person working on education issues
• Identify yourself as a constituent
• Ask them to cosponsorHR 4247 or S.2860, legislation that preventsthe harmful use of restraint and seclusion in schools
• Or click here to send an e-mail

"The Preventing Harmful Restraint and Seclusion in Schools Act" (HR 4247 and S. 2860) is needed to protect children's health and safety in schools. The use of restraint and seclusion in schools is all too common and extremely harmful. Reports have detailed hundreds of abusive uses of the practice, most frequently on children aged 6-10 and disproportionately on children with disabilities like epilepsy.

H.R. 4247 and S. 2860 would limit, but not completely ban, the use of restraint and seclusion in schools. It would require states to develop policies for the use of restraint and seclusion and allow this extreme practice only in an emergency. The bills would also provide grants to better train school staff.

The bipartisan House version was introduced by Representatives George Miller (D-CA) and Cathy McMorris Rodgers (R-WA). The Senate version was sponsored by Senator Christopher Dodd (D-CT).

The Epilepsy Foundation urges you to call and email your legislators and urge him/her to cosponsor S. 2860 and HR 4247.

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

Contact Congress Today

Take Action!

Please send an email to your Senators and Representative today supporting healthcare reform.

The Epilepsy Foundation joins the healthcare community's call for comprehensive healthcare reform. We understand that this legislation is not a perfect solution, but we urge Congress not to lose the momentum and the historic progress on health insurance reforms because of the inability to reach 100% agreement on all issues.

From the beginning, the Epilepsy Foundation has been advocating that any healthcare reform bill must include the following provisions that are critically important to people with epilepsy:

* Allow individuals to keep their current health insurance plans.

* End pre-existing conditions exclusions and denials of coverage due to health.

* Require insurance plans to provide free (or nearly free) routine preventive care.

* Limit out-of-pocket expenses (such as deductibles and co-payments).

* Eliminate lifetime caps and restrict annual limits on health insurance coverage.

People with epilepsy understand that the current system is not working; there are too many obstacles that prevent full access to health insurance benefits and services. If enacted, healthcare reform developed by the Senate and House will make it easier for people with epilepsy to receive the medical care and treatment they need.

Click here to send an e-mail to your elected officials!

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.

November is Epilepsy Awareness Month!  Celebrate by attending one (or all) of our free educational events.

On, Tuesday, November 10, we are hosting a special Parent Family Network Dinner at Upstate University Hospital in Syracuse.  All family members are welcome.  Kids will enjoy a special activity while parents are invited to listen to Dr. Helen Barkan give a talk on When Seizures Don't Look Like Seizures.  Dr. Barkan will discuss absence and other types of non-convulsive seizures and strategies to use if a family member has these types of seizures.

On Thursday, November 12, we are hosting a special Parent Family Network Dinner at our Rochester Office.  All family members are again welcome to this event as children's activities will be provided.  Dr. Kenneth Plotkin will be speaking on Interacting with Your Health Care Provider to Ensure Better Health Care.  Dr. Plotkin will talk about the importance of being informed about your health and will provide strategies that will help you to be the best health care advocate for you and your family.

On Friday, November 13, we are hosting an Epilepsy Education Luncheon in Geneva at the Ramada Lakefront.  Registration begins at 11:30 and lunch will be served at 12 noon.  After lunch, Dr. Paul Kent will present on Current Treatment Options and our social worker, Robin Didas-Mott, will present on Epilepsy at Any Age.  The luncheon will conclude at 3 pm after a Q&A session with our speakers and other invited guests.

On Wednesday, November 18, we are hosting a second Epilepsy Education Luncheon at the Holiday Inn Arena in Binghamton.  This special luncheon will feature Stephen A. Segar, Esq., an Epilepsy Foundation Board Member, a successful Rochester attorney, and an adult living with epilepsy.  Mr. Segar is an amazing speaker and will be sharing his powerful story of how he has struggled with epilepsy.  This luncheon will also feature Dr. Robert Gross speaking on Epilepsy Medications and Debra Lewis, EF's Community Educator, speaking on Health Care Planning.  This conference will also conclude at 3 pm with a Q&A session with the speakers and other invited guests.

Join us for one or all of these exciting educational events during the month of November.  All events are free and open to the public.  Seating is limited, so please register in advance by calling us at (800) 724-7930 or e-mail us at info@epilepsy-uny.org

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.