Epilepsy Foundation of Rochester-Syracuse-Binghamton

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.

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

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.

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.