Northeast Regional Epilepsy Group Epilepsy Life Links
Quick Links Newsletter N° 17 | March, 2015

1- Refractory Epilepsy - Feature Article
2- Epilepsy Star: Andrea Racioppi, Associate Director of the EFNJ
3- Epilepsy Survey Results: How do you keep safe?
4- Keeping safe with epilepsy and seizures
5- Our epilepsy community has been busy with purple knitting, and raffles to fundraise for the National Epilepsy Walk
6- Our Epilepsy and Seizure Experts have been busy
7- Epilepsy and seizures on the move- Stay tuned

 

Refractory Epilepsy - Feature Article

Although anti-epileptic drugs (AEDs) work reasonably well in patients with epilepsy, about one-thirds of the patient population fails to respond favorably to them. This phenomenon is called ‘refractoriness’.  For this issue of the Northeast Regional Epilepsy Group newsletter, clinical researcher Sloka Iyengar, PhD talked to us about refractory epilepsy, the clinical and basic science behind refractory epilepsy, and steps that can be taken if one has this condition.  

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Epilepsy Star: Andrea Racioppi, Associate Director of the EFNJ
Epilepsy Star: Andrea Racioppi, Associate Director of the EFNJ

Andrea Racioppi is the Associate Director of the Epilepsy Foundation of New Jersey, an active and vibrant foundation that spends the whole year planning activities and supporting its members through a multitude of services. We sat down with her to hear about how she came to work in epilepsy and what her plans are for the future. 

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Epilepsy Survey Results: How do you keep safe?
Epilepsy Survey Results: How do you keep safe?

Safety is always an important topic to consider when living with seizures and epilepsy.  We asked our website visitors how they keep safe and whether they use any of the following options and here are the answers to the survey.

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Keeping safe with epilepsy and seizures
Keeping safe with epilepsy and seizures

Each issue of the Northeast Regional Epilepsy Group (NEREG) newsletter, we highlight a device or technology that makes the lives of people with epilepsy easier and safer. For this issue, Sloka Iyengar, PhD – clinical researcher at NEREG spoke to Meghan Conroy – founder and CEO of CaptureProof to learn more about this medical photo and video app that has received accolades by patients and clinicians alike. 

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Our epilepsy community has been busy with purple knitting, and raffles to fundraise for the National Epilepsy Walk
Our epilepsy community has been busy with purple knitting, and raffles to fundraise for the National Epilepsy Walk

Our epilepsy community is made up of patients, loved ones, and our team of health professionals.  Every year, we join forces to raise epilepsy and seizure disorder awareness, funds for foundations that support education and research, and to spend time together.   We have been working very hard these first months of 2015.

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Our Epilepsy and Seizure Experts have been busy
Our Epilepsy and Seizure Experts have been busy

Our epilepsy and seizure experts have spent the first few months of 2015 giving lectures on epilepsy and seizure disorder topics and working hard on educating themselves earning epilepsy subspecialty board certifications and being selected to serve on Committees.  Each one of these achievements is very important because they spell improved treatment for our patients.

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Support Groups

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Our support groups are back up and running through September 2014 to June 2015!

ADULTS WITH EPILEPSY & THEIR CAREGIVERS

1st Thursday of every month - 6:30 pm
White Plains Hospital Centennial Room
Davis Avenue & East Post Road
White Plains, NY 10601

 

VIRTUAL SUPPORT GROUPS

Psychogenic non-epileptic seizures (PNES) support group
First Thursday of the month until June: From 1:00pm-2:00pm

The group is for patients diagnosed with PNES who have completed treatment or who are advanced in their current treatment.  The group meets to go over current problems that may have arisen for group members associated to PNES, for general support and comradery, and to continue to be part of the PNES community.

Third Wednesday of the month From January to June: From 6:00pm-7:00pm
The NEREG Virtual Support groups provide a forum that facilitates and promotes the sharing of common interests, information, and experiences within the epilepsy community. These online groups allow you to participate in support activities when you are unable to attend a local support meeting in person; and are managed by qualified facilitators knowledgeable on Epilepsy-related topics. During these sessions, you have the opportunity to speak with other participants, seek advice, make friends, discover new ideas, share your experiences – good and bad, and help support others managing Epilepsy. 

Joining a group is easy!
Benefits:
• All 60-minute sessions are held through GoToMeeting®
• Each group is kept small in order to encourage friendship and optimal discussion time (8-10 participants.)
• All groups are led by an experienced facilitator who is knowledgeable about Epilepsy.
• Confidential.
• Participation in this facilitated discussion is expected and encouraged. You are not on camera, so come in your PJs.
• FREE 


CONTACT INFORMATION

Urmi Vaidya
201-343-6676
uvmlcsw@gmail.com

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Epilepsy and seizures on the move- Stay tuned
Epilepsy and seizures on the move- Stay tuned

There are a lot of exciting activities coming this year so pull out your calendar and write them down so you don’t forget.  These include the National Epilepsy Walk in Washington, DC and NEREG’s annual conference on epilepsy and seizure disorders.  Both promise to be very enriching experiences!

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 iso epilepsy group www.epilepsygroup.com iso epilepsy life links www.epilepsylifelinks.com Follow Us on Facebook

Launched in 1998, Northeast Regional Epilepsy Group (NEREG) is a multi-site practice in New Jersey, New York and Connecticut that offers unique services and comprehensive care to children and adults with epilepsy. NEREG provides state-of-the-art diagnostic procedures, 24/7 patient service, highly skilled and experienced practitioners, and exceptional specialty programs designed to cover a broad range of health care needs in each epilepsy patient. NEREG consists of seventeen board-certified epilepsy specialists with fellowship training in adult and childhood epilepsy, as well as many other highly skilled health care providers including pediatric/adult neurosurgeons, neuropsychologists, clinical psychologists, epilepsy nurse practitioners, a specially trained nutritionist and epilepsy advocates.

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bullets 20 Prospect Avenue, Suite 800
Hackensack, New Jersey 07601
Tel (201) 343-6676 / Fax (201) 343-6689
bullets 333 Westchester Avenue, Suite E104
White Plains, NY 10604
(914)4289213
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