Katlynran

New Jersey Support Group

19 posts in this topic

NAPS, Narcolepsy Association of Philadelphia and Suburbs is a support group that started 25 years ago in Philadelphia & Suburbs. I took it over a few years back.

I struggle with scheduling meetings and sending out notices, finding a topic or a speaker. I am not a professional support group leader, just another person with N. If anyone would like to contribute, has ideas or a speaker that can inform and educate a group, let me know! I get e-mails from new people and I feel bad when I don't have a scheduled meeting to tell them about. My goal is to have meetings quarterly at the very least. Let me know if you can help, or want to be added to the announcement list.

Kathleen

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NAPS, Narcolepsy Association of Philadelphia and Suburbs is a support group that started 25 years ago in Philadelphia & Suburbs. I took it over a few years back.

Let me know if you can help, or want to be added to the announcement list.

Hi Kathleen, I don't have a lot of expertise, or ideas, but would be happy to help you with notifying people etc. I found the couple of meetings you had that I was able to attend to be very helpful in learning about narcolepsy. (I'm the mom w/o N) Definitely keep me on the list.

Sue

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Hi Kathleen, I don't have a lot of expertise, or ideas, but would be happy to help you with notifying people etc. I found the couple of meetings you had that I was able to attend to be very helpful in learning about narcolepsy. (I'm the mom w/o N) Definitely keep me on the list.

Sue

Thanks Sue I appreciate the support! -K

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Kathleen,

I will be glad to do another meeting. Count me in. I get such joy from all those who attend. How about November 5, 2008 6:30-8:00 pm ET. We can pick the Echelon Library if you would like, or here, or where ever. Let me know what you need.

Duff8

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Hi Kathleen,

Life is surprising. I will skip the long story that led up to this, but my daughter, who had no interest in attending a support group meeting, would now like to organize a meeting & get the local group going again. Partly because she is finally coping better, feeling better & able to acknowledge who she is rather than wishing for the kid who never got narcolepsy, lyme & everything else. Partly because I think she would like more stuff to put on college applications... She's thinking she could get something organized for September- right after everyone gets finished with summer activities. Would you be interested/willing to sharing info with her if she lines up the time, place, does the contacting people etc?

Sue

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Absolutely! My life has become overwhelmed and I am not able to volunteer all that much anymore. I would be glad to see something happen, there really is a need. I will e-mail you so we can hook up! I am sure that Tricia would be up for it too. ~Kathleen

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These replies and posts are so outdated, I fear no reply. However, I will try an hope for more information. Please send me any announcements about meetings etc. I live in New Jersey and am yet to meet anyone else with Narcolepsy.

Lisa Bento

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These replies and posts are so outdated, I fear no reply. However, I will try an hope for more information. Please send me any announcements about meetings etc. I live in New Jersey and am yet to meet anyone else with Narcolepsy.

My name is Tom and live in Bayonne- where are you?

Lisa Bento

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Well hello there! It's official. There are at least three of us here in Jersey as well as on the Narcolepsy Network. :o) Have any of us been to the local support group meetings? I for one am interested in attending but have no idea when or where they are. I also have no idea who to ask. What are your thoughts, fellow New Jerseyans?

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Hi, Tom, Lisa, Kathlyn, Sue and everyone else....I live in Highland Park, NJ right near New Brunswick. I've attended many other support groups in my day for other comorbid issues and been on the Board of Directors for the Eating Disorder Association of NJ and have some leadership skills but mostly I just want to be social. Human interaction is my natural stimulant. Would love just to get together as people who cared about one another's journeys. Even if we can't make it in person, though preferable, perhaps a weekly or biweekly conference call would be great. Let me know. Wishing you all the best.

Contemplative (aka Donna)

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Hello my name is Tre. I live in South Jersey near Cherry Hill. Driving is an issue atm but with my husband and helpful inlaws anything is possible. I would love to help pull off a meeting. Missing my teaching job and with Cherry Hill Library, Maple Shade Library and Pennsauken Library fairly close I'm sure I could find a location for Philly/SJ area. Seeing doc at einstein who wants me to see one at Jeff as well. He is familiar with the group and may be of assistance.

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Signed up.  It's a little farther but I am desperate to talk to someone else with N.  Never met one...Even if we could get live chat on NN that would be something.

 

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So I want to try to at least try to get one meetup together to see if there is interest for a PA/NJ/DE group.  After much thought the Voorhees Town Center Food Court might be a good place to meet.  It used to be the Echelon Mall with Patco nearby and buses running regularly.  (http://voorheestowncenter.com/)  If this proves to be a good area we could look at reserving space at the library across the way.  This would just be an informal meetup to meet each other.  We could discuss further meetings (where, when, and what) if people are inclined.

If you want to attend please answer any or all of the following questions either in a reply or by emailing tre_brat@yahoo.com with Narcolepsy Meetup in the subject line.

1.  Can you meet us in the early afternoon on Saturday March 16 or March 23rd?

2.  Are you interested in regular in person meetups?  If so how often?

I will post this in a few places and see if there is feedback.  If you reply or email me I will be sure to get a date and time to you.

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Sent you a message Tre! Maybe we can revive the narcolepsy support group in South Jersey. :D

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Tre - I am a newly diagnosed N wo C who lives in Voorhees. Are you still here on he forum? I'd love to meet and hear you are using for treatment etc

Dan

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