Northeast Regional Epilepsy Group PNES - PsychologicalNon Epileptic Seizures
Quick Links Newsletter N° 53 | March, 2024

1- Feature Article: PURPLE DAY®: Read all about the most important, inspiring, influential (and fun) global day for epilepsy which is now on its 16th year!
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6- Epilepsy on the move: Stay tuned for upcoming epilepsy and seizure disorder events and news in the second half of 2024.

 

Feature Article: PURPLE DAY®: Read all about the most important, inspiring, influential (and fun) global day for epilepsy which is now on its 16th year!

Purple Day® is an iconic grassroots movement that was started in Canada by an amazing little 9-year-old girl named Cassidy Megan whose favorite color was PURPLE and who was living with epilepsy. She wanted to promote global awareness about epilepsy, bring it out of the shadows, and create a community movement. In order to achieve this, on March 26, 2008, she held the first ever Purple Day with the invaluable assistance of the Epilepsy Association of Nova Scotia. 

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December 2023 Epilepsy Star: For this issue, Debra Josephs is recognized as our Epilepsy Star for her amazing work as the head of the Anita Kaufman Foundation.
December 2023 Epilepsy Star: For this issue, Debra Josephs is recognized as our Epilepsy Star for her amazing work as the head of the Anita Kaufman Foundation.

For this issue, we are very pleased to have as or Epilepsy Star, the legendary Debbie Debra (Debbie) Josephs, director of the Anita Kaufman Foundation.  Her contributions to the epilepsy community span several decades and are so many that what you will read below is just a sampling of what she has done for epilepsy in her lifetime.  We recommend you check in regularly at the Anita Kaufman website (https://purpledayeveryday.org/) because it seems like every time you do, there is a new and wonderful new initiative or resource.  For all these reasons and more, Debbie Josephs is our March Epilepsy Star. We can’t think of anyone more deserving!

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Epilepsy Survey results. We asked our readers, have you ever bitten your tongue during a seizure. Scroll down to see the responses.
Epilepsy Survey results. We asked our readers, have you ever bitten your tongue during a seizure. Scroll down to see the responses.

Survey: For this issue, we asked our readers, have you ever bitten your tongue during a seizure. There were three responses to choose from: Yes, No, I didn’t even know that could happen.  

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Safety in epilepsy and seizures: Being a tourist when you have epilepsy (how to make sure to enjoy your trip to the fullest by traveling safely
Safety in epilepsy and seizures: Being a tourist when you have epilepsy (how to make sure to enjoy your trip to the fullest by traveling safely

It is not uncommon for people with epilepsy (PWEs) to have concerns when taking a flight; they especially might worry about the possibility of having a seizure during the trip; the invisibility of epilepsy which could make it harder to request accommodations; and about how to manage their anxiety.  When facing the unknown, it can be helpful to educate yourself as much as possible (e.g., tips, your rights, and reminders).  Let’s start with some key factors to keep in mind: the potential disruption to sleep that comes with travel and time changes, the possibility that you may be nervous and which could lead to hyperventilation, and the possibility of dehydration or skipped meals. Read on about some useful recommendations for flying as a tourist with epilepsy.

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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.

Our NEREG team has been very busy during these past months between presenting at conferences, publishing about epilepsy in textbooks, and working hard to bring awareness through International Epilepsy Day.  Also, in January, NEREG/MAESC met for our quarterly virtual epilepsy book club and every month, our monthly virtual epilepsy support group was held. Also, NEREG is a proud sponsor of Epilepsy Services of NJ’s Paint the Pony Purple!

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Support Groups

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VIRTUAL SUPPORT GROUPS

PSYCHOGENIC NON-EPILEPTIC SEIZURES (PNES) SUPPORT GROUP

Fourth Wednesday of the month from September until June: From 12-1 PM
The group is only for patients at our NEREG Psychogenic non-epileptic seizures (PNES) program. They have been diagnosed with PNES and have completed their treatment at the NEREG PNES Program. To register or obtain more information: dramyers@yahoo.com

EPILEPSY ADULT SUPPORT GROUP (for patients and loved ones)

Monthly meetings through June 2024

To inquire about it or to join, email dramyers@yahoo.com. The group is for persons with epilepsy (or loved ones) who wish to connect virtually with others also living with epilepsy. The group meets to touch base, to go over challenges that may have arisen for group members associated with epilepsy, for sharing of resources, and for general support and camaraderie.

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 can have your camera on or off-your choice.
• FREE 

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Epilepsy on the move: Stay tuned for upcoming epilepsy and seizure disorder events and news in the second half of 2024.
Epilepsy on the move: Stay tuned for upcoming epilepsy and seizure disorder events and news in the second half of 2024.

Stay tuned for upcoming epilepsy and seizure disorder events and news in the new year! 

March 26: Purple Day! Many of you have heard about this global awareness raising day when we can all be as creative as possible with the color purple (official color of epilepsy) as long as we are striving to raise awareness and educate others about this serious and important disorder.  

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 iso epilepsy group www.epilepsygroup.com iso epilepsy life links www.epilepsyandsleep.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 twenty 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.
Launched in 2003, Mid-Atlantic Epilepsy and Sleep Center (MAESC) is a practice located in Bethesda, Maryland that offers neurological services and comprehensive care to children and adults. MAESC consists of six board-certified neurologists who treat epilepsy, multiple sclerosis and other neurological illnesses.


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Hackensack, New Jersey 07601
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White Plains, NY 10604
(914)4289213
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