Epilepsy Foundation of Rochester-Syracuse-Binghamton

Recently, the IRS revoked the tax-exempt status of over 19,000 non-profits.  Among those listed was an Epilepsy Foundation of America at a Syracuse address.  This organization was not affiliated with the Epilepsy Foundation of Rochester-Syracuse-Binghamton.

The Epilepsy Foundation of Rochester-Syracuse-Binghamton files all reports required by the IRS to maintain our tax-exempt status.  We invite you to visit our Publications page where we have made all of our annual reports for the last three years available.  You can also check out our profile on GuideStar.org.  Our legal name is the Epilepsy Association of Greater Rochester and we have been officially known as the Epilepsy Foundation of Rochester-Syracuse-Binghamton for the past eleven years.

Our Syracuse office at 1045 James Street has been in operation for over 12 years.  We provide epilepsy and seizure education, support group, counseling, case management, service coordination and employment services to Onondaga and surrounding counties.

Contact us today at info@epilepsy-uny.org or (800) 724-7930 if you have any questions!

The Epilepsy Foundation of Rochester-Syracuse-Binghamton is very proud to announce that the Kessler Foundation has awarded a $455,000 2-year grant to fund a new collaborative program entitled NY Employment Solutions.

The grant the Epilepsy Foundation received is an Employment Signature Grant, which seeks to fund cutting edge, non-traditional solutions and social ventures for individuals with disabilities. The focus will be on individuals with epilepsy and traumatic brain injuries, ages 18 to 65. We will provide services to help with transitioning from school to work, career changes, and overcoming barriers to employment. Our goal is to serve at least 50 unique individuals at each program site over the course of the 2 years, for a total of 200 individuals served. Individuals enrolled in NY Employment Solutions will be placed in jobs, internships, or volunteer positions that fit their interests, skills, and abilities. The goals of this program are to increase the participant’s ability to find and maintain jobs, increase the participant’s skills to enhance life-long earning potential, and connect participants with other resources.

“We are extremely excited to bring this collaborative, vocational-focused program to individuals with epilepsy across New York State,” states David W. Milliman, President & CEO of the Epilepsy Foundation of Rochester-Syracuse-Binghamton. “We are very grateful to the Kessler Foundation for recognizing the importance of this type of program and to our partner agencies for supporting this joint venture.”

More information can be found on NY Employment Solutions website: http://www.nyemploymentsolutions.org

The Collaborative

The Epilepsy Foundation of Rochester-Syracuse-Binghamton is the lead agency for this project and is partnering with three other epilepsy organizations in New York State to execute NY Employment Solutions: Epilepsy Association of Western New York, Epilepsy Society of Southern New York, and Epilepsy Foundation of Metropolitan New York. NY Employment Solutions services will be available to all individuals with seizures, epilepsy or traumatic brain injuries within the territories of the four collaborating agencies.

Kessler Foundation

Located in West Orange, New Jersey, Kessler Foundation strives to be a leader in rehabilitation research and grant making that benefit people with disabilities. The Foundation's mission is to improve quality of life for people with physical and/or cognitive disabilities through discovery, innovation, demonstration, application, and dissemination. Kessler Foundation Research Center conducts research that improves function and quality of life for persons with injuries of the spinal cord and brain, including stroke, multiple sclerosis, TBI and other chronic neurological and orthopedic conditions. Kessler Foundation also supports programs that promote the employment of people with disabilities through its Program Center's Transition to Work Signature and Community Employment Grants. The Foundation's Special Initiative Grants support educational programs like 'ThinkFirst', an injury prevention program aimed at children and teens. Kessler Foundation has a full-time staff of 90 individuals divided between two locations in West Orange, New Jersey.  For more information, visit http://www.KesslerFoundation.org

Out of Pocket Productions, a local theatre company founded by Irondequoit actress Stephanie Siuda, is putting on the play Separation which will run on Geva Theatre Center’s Nextstage from January 27th to February 6th.

A portion of the proceeds from this production will benefit the programs and services of the Epilepsy Foundation. Tickets can be purchased on Geva Theatre's website.

Separation

Middle-aged and overweight British playwright Joe Green hasn't been able to write since the premiere of his play about a woman faced with a lifetime in a wheelchair. A young American actress who is suffering the debilitating effects of the illness that plagues the character in Joe's play wishes to procure the rights to perform in it in New York. Over a series of transatlantic phone calls, what starts out as an artistic collaboration develops into something more —an unlikely romance that must overcome not only geographical distance but the treacherous terrain of two battered hearts.

Show Dates and Times

Thursday, January 27th at 7:00

Friday, January 28th at 7:00

Saturday, January 29th at 1:30 (matinee)

Saturday, January 29th at 7:00

Sunday, January 30th at 1:30 (matinee)

Saturday, February 5 at 1:30 (matinee)

Saturday, February 5 at 7:00

Sunday, February 6 at 1:30 (matinee)

HealthyTransitionsNY is a great website for teens with developmental disabilities, their parents and caregivers. Healthy Transitions teaches teens and parents how to transition from pediatric systems to adult systems.  There are videos, lessons plans, and fact sheets all designed to teach teens with development disabilities how to activity manage their own health care needs.

Check it out! 

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.