News and Information

The News and Information section of the The Epilepsy Foundation's web site will be updated on a regular basis to provide you with information about the latest events concerning epilepsy in NYC, the latest information on clinical trials at the Comprehensive Epilepsy Centers in NYC, and new treatment information. Click on the topic below to find out more information.

CLINICAL TRIALS

UPCOMING EPILEPSY EVENTS IN NYC

LATEST NEWS ABOUT EPILEPSY



CLINICAL TRIALS


epgp logo for certificate-EEG.png

EPGP-Title.jpg

The Epilepsy Phenome/Genome Project is the largest research study of its
kind to understand what causes epilepsy, why people respond
differently to anti-seizure medications, and why some families have
several people with seizures.

Please click here to learn more about this important project!

UPCOMING EPILEPSY EVENTS IN NYC

Tuesday, November 25th 2008.
Epilepsy Awareness night at Columbia University Basketball double-header.


Women's game begins at 4:30pm
Men's game begins at 7:00pm

A portion of ticket sales go to benefit The Epilepsy Foundation of Metropolitan New York

For tickets please call 1-888-Lions-11 or visit http://www.gocolumbialions.com


 

*********************************************************************************************


School Education Program

The The Epilepsy Foundation Public Education Division is targeting the New York City Schools to educate school nurses and all school staff about epilepsy, first aid, and supporting children with epilepsy in the classroom. If you are interested in having an in-service training at your child's school or learning more about the Public Education Division, call The The Epilepsy Foundation at 212-677-8550.

Ask the Nurse
The The Epilepsy Foundation is pleased to announce our new specialized Ask the Nurse program. Have you ever left a medical appointment with unasked or unanswered questions? If so you may wish to utilize our Ask the Nurse program. Do you have any questions regarding these or other medical issues?
- epilepsy prognosis
- nutritional counseling
- understanding medication side effects
- managing multiple medical conditions
- pregnancy and epilepsy
- treatment options

The The Epilepsy Foundation has a Clinical Nurse Specialist available to talk with you. Call The The Epilepsy Foundation at 212-677-8550 to arrange for an appointment.

Earned Income Tax Credit
Did you know that a family who has earned income up to $31,152 may be entitled to receive up to $3,888 refund through the Earned Income Tax Credit? This credit is a mechanism where the government provides cash assistance to working people. While in 1999, over 19 million families and individual workers received credits worth more then $30 billion estimates suggest that many workers who are eligible are not getting the credit. This is because they haven't heard about it, don't know that they are eligible or don't know how to apply.

This credit applies only to income earned through work, and is based on a person's modified adjusted gross income. Even if no tax is owed you may still qualify for this cash!

There are many factors that determine eligibility. The most important are income requirements. Families with two or more children can have income up to $31,152; families filing with one child can have income up to $27,413, and for single people the income limit is up to $10,380. For people who have a permanently disabled child living with them, the child can be any age. Otherwise a family may include children up to 19 years of age or, if the child is a full time student, up to age 24.

Every neighborhood in New York City has Volunteer Income Tax Assistance sites, which have been designated to help eligible people to apply for the Earned Income Credit and other credits. This service is free of charge.

If you are interested in learning more about the Earned Income Credit, the following resources may be helpful. IRS website - www.irs.ustreas.gov, IRS telephone assistance - 1-800-829-1040, Tele-tax - recorded tax information - 1-800-829-4477.

This information has been provided by The The Epilepsy Foundation. The The Epilepsy Foundation is dedicated to improving the lives of people with epilepsy and their families residing in New York City. For further information on The Institute's programs and services call 212-677-8550.


LATEST NEWS ABOUT EPILEPSY

The Epilepsy Coalition of New York State, Inc.

The Epilepsy Coalition of New York State, Inc. has been formed to promote awareness of epilepsy and its consequences to public and private sectors in New York State, and to provide more funding opportunities to the epilepsy service system throughout the state. The goal is to improve the quality of life for those who live with epilepsy on a daily basis. The Coalition's efforts have significantly expanded service opportunties and educational outreach throughout New York State. For more information about The Epilepsy Coalition of New York State, Inc. contact the number below.

The Epilepsy Coalition of NYS, Inc.
120 Washington Avenue
Albany, New York 12210
518/434-4360
518/434-4542 (fax)
Future website: http://www.epilepsyny.org.


Child Health Plus and Family Health Plus

  • Did you know that ALL children in NY State have access to affordable health care?
  • Child Health Plus is available free or low cost to all children not covered by Medicaid. If a family of four's annual income is less than $27,213, then all children qualify for FREE health care. For household income up to $37,852 the cost of health care is just $9 per month per child.
  • Regardless of imigration status, all children are covered.
  • Family Health Plus is a NEW program beginning in 2001, which will begin offering health insurance to singles and parents with low income but who do not qualify for Medicaid.
  • Enrollment is being conducted by community based organizations. There is now just ONE form for the family to fill out for medicaid, child health plus, and family health plus. No running all over the city or waiting in long lines to enroll.

    If you are interested in finding out more about Child and Family Health Plus call 1-800-522-5006.


Vagus Nerve Stimulator


The Vagus Nerve Stimulator is the first new approach to treating epilepsy in over a 100 years! The FDA approved it in 1997 as an "add-on" therapy in reducing partial onset seizures that are not well controlled by medications for adults and adolescents over 12 years of age. It is now being used for many seizure types and in younger children.

The Vagus Nerve Stimulator is a pacemaker-type device, which is implanted under the skin on the chest. Thin wires run up to the neck where it stimulates the vagus nerve. The stimulator is programmed to give short pulses of electrical stimulation from the battery in the chest to the vagus nerve which then carries the energy to the brain. The clinician can alter the strength and frequency of stimulation non-invasively to adjust the "dose" to meet the needs of each individual patient. If the person with the implant or a family member senses that a seizure is likely to occur, they can pass a special magnet over the area in the chest where the generator is implanted to activate an extra, on-demand stimulation.

Although it is not fully understood how the Vagus Nerve Stimulator prevents seizures, some people's seizure frequency and intensity can be significantly reduced, though not usually eliminated
.
To find out more about the Vagus Nerve Stimulator contact the Epilepsy Institute at 212-677-8550, Cyberonics at 1-800-332-1375, and/or talk to your doctor to find out whether this treatment is right for you.


New Medication


Keppra On June 24, 2005, UCB Pharma announced that the U.S. Food and Drug Administration approved the company's antiepilepsy medication, Keppra (levetiracetam) as an add-on treatment of partial-onset seizures for children with epilepsy who are four years of age and older. This approval for children was based on a six month priority review. Keppra was approved in 1999 as an adjunctive therapy for adults with partial onset seizures.

Lyrica (pregabalin) On June 13, 2005 Pfizer announced that it received FDA approval to market Lyrica as an add-on treatment for partial onset seizures in adults with epilepsy. Lyrica has already been approved for treating epilepsy patients in 46 countries. It will be available in US pharmacies in the fall of 2005.

Trileptal (oxcarbazepine) was recently approved as an add on therapy of partial and complex seizures for adults and children over four years of age. Trileptal is usually taken two times a day.

Keppra (levetiracetam) was approved as an add-on medication for treatment of partial and complex seizures. Because Keppra is not chemically related to other anti-seizure medications, it does not interfere with how the body metabolizes other anti-seizure medications. Keppra is usually taken two times a day.

Zonegran (zonisamide), which is chemically unlike other AEDs, was approved by the FDA as add-on therapy for partial seizures in persons age 16 and above. It has been used in Japan and other countries for over ten years.

Topamax (topiramate) is an antiepileptic drug used for adjunctive therapy for adults and ediatric patients above the age of 2 years with partial onset seizures or primary generalized tonic-clonic seizures. In October 1998, a sprinkly formulation of Topamax was approved by the FDA. With this new formulation the capsule can be opened and its contents can be sprinkled onto soft food for easier swallowing, or the capsule can be swalloed whole, offering patients greater flexibiity.

Gabitril (tiagabine hydrochlorine) is an antiepileptic medication used for adjunctive therapy for adults and children 12 years and older in the treatment of partial seizures.

Lamictal (lamotrigine) is an antiepileptic medicatin indicated for monotherapy and adjunctive therapy in adults with partial seizures, and as adjunctive therapy in the generalized seizures of Lennox-Gastaut syndrome. Felbamate is an add on therapy or a single drug therapy.

Diastat (diazepam rectal gel) is a gel formulation of diazepam used for select patients with epilepsy, who take AEDs regularly, but require use of diazepam to control bouts of increased seizure activity or clusters of seizures quickly. This is a new rectal gel formulation of diazepam, also known as valium, which is also prescribed in a pill or given as an injection.