Northeast Regional Epilepsy Group PNES - PsychologicalNon Epileptic Seizures
Quick Links Newsletter N° 50 | June, 2023

1- Feature Article: The Epilepsy Alliance America: a cornucopia of resources, initiatives and projects supporting those living with epilepsy and seizures.
2- Recap of our annual psychogenic non-epileptic seizures (PNES) virtual conference: Updates on PNES treatments for adults and children
3- Epilepsy Survey results: We asked our readers Have you ever been prescribed seizure rescue medications?
4- Seizure Survey results from our PNES website: Over the last many months, we have asked the visitors to www.nonepilepticseizures.com to tell us: How do they prefer their seizures be called?
5- Our epilepsy and seizures community of patients, family, friends and doctors has been busy celebrating Purple Day and meeting for the third epilepsy book club meeting.
6- Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in the last half of 2023!

 

Feature Article: The Epilepsy Alliance America: a cornucopia of resources, initiatives and projects supporting those living with epilepsy and seizures.

Epilepsy Alliance America (EAA)-an organization dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.
Our readers may or may not have heard about EAA before today. If you are one of those who are just hearing about this alliance, you will want to keep reading. 

In the past couple of years, EAA has grown exponentially and is now providing an exceptional array of services (education and reading materials, camp programs, employment and medication assistance, legislative advocacy, seizure first aid training, support groups and networking opportunities, scholarships, and much, much more). This group has also been busy creating alliances among other superb groups leading to strength in numbers. Our questions were answered by several staff members in EAA.

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Recap of our annual psychogenic non-epileptic seizures (PNES) virtual conference: Updates on PNES treatments for adults and children
Recap of our annual psychogenic non-epileptic seizures (PNES) virtual conference: Updates on PNES treatments for adults and children

On April 29, the Northeast Regional Epilepsy Group hosted its 7th annual PNES conference after a three-year hiatus due to the global pandemic. There were a few differences from previous years including 1) that it was held virtually, 2) that the focus was solely on treatments, and 3) that it lasted only half a day since we have found that conferences that last all day, can wear everyone down (the presenters and the audience).  

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Epilepsy Survey results: We asked our readers Have you ever been prescribed seizure rescue medications?
Epilepsy Survey results: We asked our readers Have you ever been prescribed seizure rescue medications?

Epilepsy Survey results: For this issue, we asked our readers: Have you ever been prescribed seizure rescue medications? The reason we asked this question is because in our last newsletter issue, our feature article was about the administration of seizure rescue medications in schools and colleges. That led the newsletter staff to wonder how many of our readers and visitors actually know about this type of medication and have been prescribed one of these?

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Seizure Survey results from our PNES website: Over the last many months, we have asked the visitors to www.nonepilepticseizures.com to tell us: How do they prefer their seizures be called?
Seizure Survey results from our PNES website: Over the last many months, we have asked the visitors to www.nonepilepticseizures.com to tell us: How do they prefer their seizures be called?

Seizure Survey: For this issue, we are also publishing the responses to our survey in www.nonepilpeticseizures.com. Visitors were asked the following question: what name do you prefer be used when discussing your seizure condition?   

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Our epilepsy and seizures community of patients, family, friends and doctors has been busy celebrating Purple Day and meeting for the third epilepsy book club meeting.
Our epilepsy and seizures community of patients, family, friends and doctors has been busy celebrating Purple Day and meeting for the third epilepsy book club meeting.

Epilepsy on the move! Our community of epilepsy and seizures members is composed of patients, family members, friends and doctors. And over the past few months, our group has been especially busy!  To name but a few items, the Northeast Regional Epilepsy Group and partner, Mid-Atlantic Epilepsy and Sleep Center continue with their Wellness in Epilepsy Program. The third virtual book club was held in May, Purple Day was celebrated, the epilepsy support group continued to meet, and the 7th annual PNES conference was held.

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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)

Next meeting will be on September 20, 2023
To inquire about it or to join, email dramyers@yahoo.com. Next meetings will be on: March 15, April 19, May 17 and June 21. 
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 last half of 2023!
Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in the last half of 2023!

Stay tuned: There are plenty of upcoming activities that you may want to jot down and keep in mind over the next few months. These are especially attractive once summer is over.  The highlight at this time of the year is the 10th Annual Walk and Run for Epilepsy held in New Jersey and hosted by the Epilepsy Services of NJ. 

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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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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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