Issue: December 2012
 

Welcome to Epilepsy News brought to you by the Epilepsy Foundation of New Jersey. We pride ourselves in sending you the most up-to-date information about epilepsy events, conferences, and issues that are important to you.


Be sure to check this email, our website and thetrainingcalendar.org for information on rescheduled events.

  


You may also find an archive of past issues and additional information at www.efnj.com
_______________________________________

 
Epilepsy Webinar
  
New Drug Treatments

Thurs, Dec. 13, 2012 7:00pm- 8:00pm
Dr. Evren Burakgazi
Click here to register.

 

This webinar is about updates on current medical treatment and surgical options for epilepsy patients. There are many new antiepileptic drugs available in providing better seizure control. Also surgical options are expanding from vagal nerve stimulator, deep brain stimulation to respective surgery. It will also review how to choose the best antiepileptic medication based on patient's epilepsy type, age, gender, underlying co-medical conditions and presence of co-medications.

 

 

 

EFNJ Gets Generous Donation From Jonathan Green 

 

 

Thank you to the Pretz family for their generous donation of $600 to the Epilepsy Foundation of New Jersey.  Kelly Pretz, a high school Junior, volunteers in our Manasquan and works as a mentor to other teens with epilepsy.  Every year, Jonathan Green  the family business of grass seed and fertilizer, has committed a percentage of their sales to EFNJ. 

 

Thank you to the Pretz family for your continued support of EFNJ!

 


In This Issue
- Epilepsy Webinar..New Drug Treatments
- EFNJ Gets Generous Donation From Jonathan Green
- New Jersey Driving Law Improves for People with Epilepsy
- Further Study Into SUDEP
- Settlement in NJ Diastat Administration Case
- Candlelight Concert for Epilepsy Awareness
- Paint the Pony Purple Set for March 24th
- "Now I Know"
- Natural Disaster Medication Reimbursement Plan
- Some Generic Epilepsy Tx More Equal Than Others
- Program Heads Off Depression in Epilepsy
- Shop for a Cause!
- Host Your Own Fundraiser
Epilepsy Foundation of NJ
is a state-wide, non-profit charitable agency dedicated to helping to improve the quality of life for people affected by epilepsy and their loved ones. More "About Us"

Like us on Facebook  Follow us on Twitter  
 
Our affiliates:





New Jersey Driving Law Improves for People with Epilepsy
  

Effective Monday, November 19, 2012 the New Jersey Motor Vehicle Commission reduced the seizure free period from one year to six months for drivers with epilepsy.  This is a wonderful day for people with epilepsy in New Jersey, we anticipate that it will improve care and treatment, as well as employment for many.

 

Until now, New Jersey had been one of only a handful of states in the nation that required such a lengthy seizure free period to be eligible to drive. Between 1991 and 1992, as published in Epilepsia in 1994, representatives from the American Academy of Neurology, American Epilepsy Society and the Epilepsy Foundation of America met in a consensus conference on appropriate criteria for driver licensing of persons with epilepsy. Using the consensus positions as a foundation, the representatives crafted and agreed on model regulations and sample statutory provisions in March 1992. These recommendations included that a seizure free interval should be stated and that 3 months is preferred, starting from the date of the seizure.

 

In many states, the laws have become more liberal in recent years, resulting in fewer restrictions for people with epilepsy. The laws are written to protect public safety and to grant the privilege of driving to people who are the least likely to have an accident.

 

Thanks to the work of epilepsy advocates including members of the New Jersey Epilepsy Task Force, New Jerseyans with epilepsy will have less restrictions and the improved access that is often essential for independence and employment.

 

We have not yet been successful in eliminating the physician reporting requirement, but we have dedicated individuals with epilepsy, family members and professionals who are committed to continue working on this issue.

 

For more information on New Jersey Administrative Code (N.J.A.C.) 13:19-5.1 (2012) go to http://www.lexisnexis.com/hottopics/njcode/

 

TITLE 13. LAW AND PUBLIC SAFETY  
CHAPTER 19. COMPLIANCE AND SAFETY  
SUBCHAPTER 5. CONVULSIVE SEIZURES


N.J.A.C. 13:19-5.1 (2012)


13:19-5.1 Satisfaction of physical qualifications

   Any person 16 years of age or older who suffers or who has suffered from recurrent convulsive seizures, recurrent periods of impaired consciousness, or from impairment or loss of motor coordination due to conditions such as, but not limited to, epilepsy, in any of its forms, shall, as a prerequisite to the issuance of a learner's permit or driver's license, renewal of a driver's license, or retention of a driver's license, establish to the satisfaction of the Chief Administrator that he or she has been free from recurrent convulsive seizures, recurrent periods of impaired consciousness, or from impairment or loss of motor coordination for a period of six months with or without medication and that he or she is physically qualified to operate a motor vehicle. 

 

  
Codey Introduces Legislation Calling for Further Study Into Sudden Unexplained Death in Epilepsy (SUDEP)
  
 

On October 1, 2012, Senator Richard J. Codey (D  Essex, Morris) introduced legislation that will seek to provide further research into Sudden, Unexpected Death in EPilepsy (SUDEP). SUDEP is when a seemingly healthy person dies unexpectedly and no reason for death can be found. The most common criteria used to determine whether a death is due to SUDEP are (Leestma, et al 1997):

  • The person had epilepsy, defined as recurrent unprovoked seizures.
  • The person died unexpectedly while in a reasonable state of health.
  • The death occurred suddenly.
  • The death occurred during normal activity, often during sleep and found in or near the bed.
  • An obvious medical cause of death could not be determined at autopsy.
  • The death was not the direct result of status epilepticus.

 

"While many, if not all, of us know someone with epilepsy, it is shocking that we know so little about SUDEP," said Codey. "It does not have to be this way. By having a uniform way in which to collect information on this gravely serious issue, we can take giant steps forward in understanding how and why this happens. With that knowledge, we can then work on preventing it."

The bill would require the State Medical Examiner to establish a program to educate medical examiners in New Jersey about SUDEP. Medical examiners would be required to include, as part of their investigation into the cause of death, questions that would determine if the person in question had epilepsy. Family members of those suspected to have died of SUDEP or who had epilepsy would also be asked permission to send all relevant medical information of the deceased to a SUDEP registry.

Senator Codey sponsored the bill after being approached by those in the medical community who were concerned about the lack of research into the problem.
 

The bill will head to the Senate Health, Human Services and Senior Citizens Committee.

 

 

  

Settlement in NJ Diastat Administration Case

  
  

The Justice Department just finalized a case settlement, made public yesterday, requiring a child care center in New Jersey to administer emergency antiseizure medication to children with epilepsy and provide other seizure first aid. This appears to be the first settlement of its kind -- and should help to caution child care centers around the country regarding their obligations under the ADA to provide this care. The settlement is available on Justice's web site at  http://www.ada.gov/toddlers_n_tots.htm.  The US Justice Department reached out to the Epilepsy Foundation to provide training as part of the settlement, EFNJ will be conducting a training at the child care center in January.

 

                             

 
   
  
candlelight concert 

The Candlelight Concert for Epilepsy Awareness is being sponsored and promoted by Eric Miller in part to honor the memory of his late wife, Carolina Barcelos Carneiro de Oliveira Miller. On August 22nd, 2011, Carolina, age 25, passed away suddenly as a result of epilepsy.She was just 25 years old. It is our privilege to collaborate with Eric to raise awareness about epilepsy and carry on the remembrance of Carolina. This fundraising effort is designed to reverse the history of stigmatization and further contribute to seeking a cause and cure for epilepsy.

 

For more information please visit http://www.candlelightconcert.org/

  

 

Further Information has been released in USA Today. Please visit http://sites.conversionplanet.com/epilepsy-awareness/home/i-lost-my-wife-to-sudden-unexpected-death-in-epilepsy for more information.

 

 

 

    

The Second Annual Paint the Pony Purple event will be held on Sunday, March 24th at the celebrated Stone Pony in Asbury Park, NJ. The event will be the first of the year for EFNJ and will doubtlessly include some effort for Sandy relief.

 

Last year's event raised about $5,000 to support EFNJ's Fifth Grade Program. Tickets are expected to be reasonably priced at $20.00 each

  
"Now I Know"

 

Introducing the "Now I Know" Video Campaign

November is National Epilepsy Awareness Month!

 

As part of our mission to help overcome the challenges created by epilepsy, we're pleased to announce our Now I Know video campaign.

 

When it comes to epilepsy, what do you know now that you wish you knew sooner?

 

We're inviting people with epilepsy, their friends, family and caregivers to log on to Facebook, starting November 1st, and share through a video what they've learned, and what resources have helped them.

 

Visitors to our Facebook page will have the opportunity to vote for their favorites and share the videos through their social networks. At the end of the contest, the videos with the most votes in each of four regions, will win iPads, among other prizes.

 

Select videos may also be featured here on our website and at our National Walk for Epilepsy in Washington, DC. We hope to pool the collective knowledge of the epilepsy community into an easy-to-use resource and to serve as a jump-start point for talking about the disorder with our communities.

 

Submit your video today to our Now I Know! Facebook app

.

Official Contest Rules   

 

 

Natural Disaster Medication Reimbursement Plan
 
Are you in need of anti epileptic medication and are unable to pay for it as a result of Super Storm Sandy?  The Epilepsy Foundation has a Natural Disaster Medication Reimbursement Plan that exists to assist with payment.
 
Do you...
  • have epilepsy and require medication
  • live in an area affected by Sandy
  • have no other source for payment other than through this medication reimbursement plan

If so, please contact the Epilepsy Foundation of New Jersey at 800-336-5843.  Our staff will:

  • help arrange for you to receive medication at agreed upon pharmacy
  • provide direct payment to pharmacy
 
 
Some Generic Epilepsy Tx More Equal Than Others
  

SAN DIEGO -- Generic slow-release drugs for seizure disorders appear equivalent to branded versions, researchers said here, unlike earlier findings with immediate-release formulations.

 

Bioequivalence data from 53 studies submitted to the FDA for 25 generic modified-release drugs for epilepsy -- including phenytoin, carbamazepine, levetiracetam, and divalproex -- were reviewed. Despite considerable variability in the upper and lower bounds of the 90% confidence intervals for maximal concentrations (Cmax) and total drug exposure over time (area under the curve, AUC), the products could be interchanged without danger to patients, reported Ravi Juluru, MD, of Oak Ridge Institute for Science and Education in Nashville, and colleagues at the American Epilepsy Society's annual meeting.

 

continue reading

 

 

Program Heads Off Depression in Epilepsy
  

SAN DIEGO -- Mindfulness-based cognitive therapy delivered by Internet or telephone significantly reduced development of major depression and showed signs of cutting seizure activity, a researcher said here. 

 

No patients assigned to receive the so-called UPLIFT program in a randomized trial met criteria for major depression in the 16-week study, whereas 10.7% of patients put on a wait-list were diagnosed with the condition (P=0.028), reported Nancy A. Thompson, PhD, MPH, of Emory University in Atlanta.

 

Patient-reported seizure frequency also declined by almost half in the intervention group, whereas it doubled in the wait-listed controls (P=0.025).

 

  
  
Shop For A Cause!
  
What better way to raise money for the Epilepsy Foundation of NJ than by shopping?  You can automatically donate up to 20% of your purchases to the Epilepsy Foundation of NJ and get money-saving coupons at 2800+ stores with Goodshop.  Participating retailers include, Amazon, Best Buy, Apple Store, Macy's and more.  To participate please click here and download the tool bar.
  

 
  
Host Your Own Fundraiser
  

You can make a difference and help support the great work of the Caregivers of New Jersey by conducting your own fundraiser to support our mission. You can use the following ideas to start planning your own event.

Use the following ideas to start planning your own event:

 

Throw a Party
  • Dinner/Dessert Party: Invite friends and family over for dinner/dessert and ask them to make a donation equal to what they would have paid for a dinner/dessert at a local restaurant. Local restaurants and bakeries may be willing to donate items for your event.
  • Theme Party: Celebrate a birthday, anniversary or any holiday with a theme party and ask everyone who attends to make a donation.
Coordinate a Sporting Event or Tournament

Tennis, Golf, bowl-a thons, dance-a-thons and other sports can all be set up as events or tournaments with all proceeds from entry fees, refreshments and silent auctions going to The Family Resource Network.

Auction

Collect donated items from local businesses and host a live or silent auction.

Car Wash

Hold a car wash in the parking lot of a local supermarket or large shopping center with all funds raised directed toward The Family Resource Network. Please be sure to get prior approval from an establishment prior to hosting or advertising a car wash.

Yard Sale

Ask your friends and family to donate items to your yard sale. Since all proceeds from the sale would be benefitting The Family Resource Network, you will be surprised by how generous people can be. You can even sell refreshments at the event to raise additional money.

Canning/Money Collection

Make arrangements with a high traffic store such as the Home Depot, Lowes or grocery store to stand in front of the establishment and collect money for The Family Resource Network.

 

Please contact Resource Development at (609) 492-3900  with any questions in planning or executing your event