Northeast Regional Epilepsy Group Epilepsy Life Links
Quick Links Newsletter N° 31 | September, 2018

1- The many ways of and dates for raising epilepsy awareness - Feature article
2- Seizure star: Christina Dykenga
3- Book recommendation: What you need to know if epilepsy has touched your life: a guide in plain English.
4- Epilepsy Medical Alert Bracelets made out of Paracord
5- Epilepsy Survey results: Test your knowledge by responding to the following question: Epilepsy on-line: what social media do you prefer for epilepsy content?
6- Our epilepsy and seizures community of patients, family, friends and doctors has been busy!
7- Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in 2018

 

The many ways of and dates for raising epilepsy awareness - Feature article

Over the last years, there has been a growing number of epilepsy awareness events, days, and months-so many in fact that it can become hard to remember all of them.  Because we want to celebrate and raise awareness for epilepsy as much as possible and want many of you to join in too, for this quarterly newsletter issue, we compiled a list of several of the more important ones. You may want to pull out your calendar and take note now!

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Seizure star: Christina Dykenga
Seizure star: Christina Dykenga

Christina, you have been chosen as the September 2018 Epilepsy Star and are being featured in this issue of our quarterly newsletter. Tell us a little about yourself

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Book recommendation: What you need to know if epilepsy has touched your life: a guide in plain English.
Book recommendation: What you need to know if epilepsy has touched your life: a guide in plain English.

This book was written by Dr. Marcelo Lancman because he wanted to provide his patients with a clear and concise explanation of everything they might encounter on their journey with epilepsy (e.g. diagnosis, seizure and epilepsy types, treatment options, special topics, etc.). 

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Epilepsy Medical Alert Bracelets made out of Paracord
Epilepsy Medical Alert Bracelets made out of Paracord

Medical alert bracelets don't always have to look the same and people are surely expressing themselves beautifully lately using different materials, shapes, and colors.  For this issue, we are featuring an epilepsy bracelet that caught our eye while perusing through an arts and crafts website.  

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Epilepsy Survey results: Test your knowledge by responding to the following question: Epilepsy on-line: what social media do you prefer for epilepsy content?
Epilepsy Survey results: Test your knowledge by responding to the following question: Epilepsy on-line: what social media do you prefer for epilepsy content?

For this issue we decided to ask our visitors what sort of resources they use when looking for epilepsy content.  Visitors were asked to choose between Facebook, Instagram, Twitter, Pinterest, or other.  It looks like Facebook won out, followed by twitter. 

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Our epilepsy and seizures community of patients, family, friends and doctors has been busy!
Our epilepsy and seizures community of patients, family, friends and doctors has been busy!

Even though it was summer, doctors, office managers, secretaries and nurses have all been extra-busy these last few months raising epilepsy and seizure awareness through 1) organizing the upcoming annual Northeast Regional Epilepsy Group conference and 2) Dr. Eric Segal spoke at the Dravet Syndrome Foundation Biennial Family and Professional Conference.

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Support Groups

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Our support groups are back up and running through September 2018 to June 2019!

VIRTUAL SUPPORT GROUPS

Psychogenic non-epileptic seizures (PNES) support group
Third Tuesday of the month until June: From 12-1PM

The group is for patients at our NEREG PNES program diagnosed with PNES who have completed treatment or who are advanced in their current treatment. Unfortunately, the group is not open to anyone who has not gone through our treatment program because the demand would be too great for our conference call. The group meets to touch base, 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. To register or obtain more information: lmyers@epilepsygroup.com

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 a facilitator who is knowledgeable about psychogenic non-epileptic seizures. 
• Confidential.
• Participation in this facilitated discussion is expected and encouraged. You are not on camera, so come in your PJs.
• FREE 

CONTACT INFORMATION

If you are a NEREG patient, have epilepsy and would be interested in a similar group, please contact Lmyers@epilepsygroup.com. In the past, we tried to establish an on-line group like this for our patients with epilepsy but there was limited attendance-but who is to say that we can't try again and with better results?

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Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in 2018
Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in 2018

On September 14-15, Dr. Lorna Myers will participate in a meeting on functional neurological disorders in Atlanta, Georgia where she will present on "expectancy and the internet in PNES".

On October 5, Dr. Lorna Myers will present on psychogenic non-epileptic seizures at the Neurological Institute of Columbia Presbyterian. 

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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
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White Plains, NY 10604
(914)4289213
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