Epilepsy Foundation of Rochester-Syracuse-Binghamton

The support group for individuals affected by epilepsy is reconvening in 2012.  Join us on Tuesday, January 10th at 6pm at the Utica Development Center located at 726 Washington St. Utica, NY 13502.

This support group for people with epilepsy and their families.  It's purpose is to help each other work through the barriers that epilepsy sometimes presents. It is open to anyone who has or is affected by epilepsy.

For information, contact the Epilepsy Foundation at (800) 724-7930 or e-mail us at info@epilepsy-uny.org.

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 has learned that Pfizer is anticipating a shortage of DILANTIN 30 mg. Please let us know if you hear of stories about complications due to this shortage.

Drug Shortage Alert: Pfizer Announces DILANTIN® 30 mg (Extended Phenytoin Sodium Capsules, USP) Shortage

The Epilepsy Foundation has learned that Pfizer is contacting health care professionals, including pharmacists, about a shortage of DILANTIN 30 mg. According to Pfizer, this product shortage is due to a manufacturing issue and not the result of any performance or safety concerns. The company expects DILANTIN 30 mg to be available to patients by June 30, 2011.

The DILANTIN 30 mg product is used by a limited number of people, so check your prescription bottle to see if you might be affected by this shortage. The Epilepsy Foundation’s medical experts recommend that you contact your physician immediately if you use this product. Please keep in mind that any change to your therapy should be done only at the direction of your physician.

DILANTIN 30 mg is a prescription medicine used to treat tonic-clonic (grand mal) seizures, complex partial (psychomotor or temporal lobe) seizures, and to prevent and treat seizures that happen during or after brain surgery. The following DILANTIN formulations are still available through normal channels:

• DILANTIN INFATABS® (Phenytoin Tablets, USP) 50 mg

• DILANTIN-125® (Phenytoin Oral Suspension, USP) 125 mg

• DILANTIN® (Extended Phenytoin Sodium Capsules, USP) 100 mg

If you have any questions, please contact Pfizer Medical Information at 1-800-438-1985.

The Epilepsy Foundation will maintain close communication with Pfizer in order to keep you informed and obtain the most accurate timeline on when this shortage will be resolved.

ISSUE: Ortho-McNeil Neurologics Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc., is recalling two lots of Topamax (topiramate) 100mg Tablets. The recall stems from four consumer reports of an uncharacteristic odor thought to be caused by trace amounts of TBA (2,4,6 tribromoanisole). While not considered to be toxic, TBA can generate an offensive odor and a small number of patients have reported temporary gastrointestinal symptoms. There have been no reported serious adverse events caused by the presence of TBA in Topamax.

BACKGROUND: Topamax is indicated as initial monotherapy in patients 10 years of age and older with partial onset or primary generalized tonic-clonic seizures; as adjunctive therapy for adults and pediatric patients ages 2 − 16 years with partial onset seizures, or primary generalized tonic-clonic seizures, and in patients 2 years of age and older with seizures associated with Lennox-Gastaut syndrome; and for adults for the prophylaxis of migraine headache.

RECOMMENDATION: Patients taking Topamax 100mg Tablets who experience an uncharacteristic odor associated with their medication should return the tablets to their pharmacist, and contact their healthcare professional if they have questions.

Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program:

Complete and submit the report Online: http://www.fda.gov/MedWatch/report.htm

Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178

Read the MedWatch safety alert, including a link to the Press Release, at: http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm251556.htm

Visit www.r-word.org and pledge to support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.

On October 5, 2010, U.S. President Barack Obama officially signed bill S. 2781 into federal law. Rosa’s Law, which takes its name and inspiration for 9-year-old Rosa Marcellino, removes the terms “mental retardation” and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.” The signing of Rosa’s Law is a significant milestone in establishing dignity, inclusion and respect for all people with intellectual disabilities.

You can help by pledging to eliminate the r-word from your speech and remind others how hurtful the r-word can be.  Visit www.r-word.org today! 

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)

The Epilepsy and My Child website (a product of the National Epilepsy Foundation) is hosting a three-part webinar series on Thriving with Epilepsy. This three-part series is presented by the National Center for Project Access at the Epilepsy Foundation and is designed to help parents increase their knowledge and awareness of school issues concerning their children with epilepsy. 

The topic for Part 1 is Learning and Behavior Issues in School-Aged Children with Epilepsy presented by Dr. Joan Austin.  Click here to watch and to register for the live webinar event!

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.