Northeast Regional Epilepsy Group Epilepsy Life Links
Quick Links Newsletter N° 33 | March, 2019

1- Lennox Gastaut syndrome (LGS): Feature article
2- Seizure stars: Pat Gibson
3- This issue’s highlight product: Epilepsy awareness wreath
4- Epilepsy Survey Results: which do you prefer when identifying someone with epilepsy.
5- Our epilepsy and seizures community of patients, family, friends and doctors has been busy!
6- Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in 2019

 

Lennox Gastaut syndrome (LGS): Feature article

For this newsletter issue, we are featuring a rare yet severe form of childhood epilepsy, called Lennox-Gastaut Syndrome.  We were fortunate enough to have Christina Saninocencio, the founder of the LGS Foundation answer our questions and tell us a bit more about all the incredible things her foundation does for individuals living with LGS and their families.

 

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Seizure stars: Pat Gibson
Seizure stars: Pat Gibson

Patricia Gibson, MSSW, DHL, ACSW is a true inspiration to the epilepsy and seizure disorders community having dedicated herself for decades to improving the lives of those living with seizure disorders in a multitude of ways.  We sat down with her to hear about how she came to work in the field of epilepsy, to hear all about everything she has been doing to advance epilepsy over the years, and especially, what her plans are for the future. 

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This issue’s highlight product: Epilepsy awareness wreath
This issue’s highlight product: Epilepsy awareness wreath

This issue's highlight product: the Epilepsy Awareness Wreath that you can hang on your door or in the house as an all-year decoration. Read the article to learn more about how it was first created and how you could purchase one for yourself.

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Epilepsy Survey Results: which do you prefer when identifying someone with epilepsy.
Epilepsy Survey Results: which do you prefer when identifying someone with epilepsy.

For this newsletter issue, we asked guests who visited our homepage (www.epilepsygroup.com), which do you prefer when identifying someone with epilepsy:
- Person with epilepsy
- Epileptic
- Individual with epilepsy
Responses came in regularly and in the end (after 3 months), here are the results...

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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 has been winter, our doctors, office managers, secretaries and nurses have definitely not slowed down one bit. Instead, they have been extra-busy raising epilepsy and seizure awareness through:
1) prepping for and celebrating International Epilepsy Day,
2) publishing scientific articles in peer-reviewed journals. 

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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 2019
Epilepsy on the Move: Stay tuned for upcoming epilepsy and seizure disorder events and news in 2019

We strive to keep moving all year long in the march against epilepsy and seizures and the upcoming months are no different with educational events, symposiums and local epilepsy walks and even the National Epilepsy Walk in Washington, DC.  

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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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Tel (201) 343-6676 / Fax (201) 343-6689
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White Plains, NY 10604
(914)4289213
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