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Replying to Support Group In Or Around Sf Bay Area


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Posted Today, 01:29 AM

I live on the Peninsula and am definitely interested! Please keep me updated on any future meet-ups: kendahlia@gmail.com.

doinmdirndest

Posted 04 November 2014 - 02:00 PM

i'm interested, and i'll come from napa to be there when we meet.  keep us posted.


Posted 04 November 2014 - 11:36 AM

Hi, This is Debra. I live in San Jose/Santa Clara area. I was diagnosed last February of 2014 with N. I am disgusted that it took so long to be diagnosed. I am a registered nurse. I never considered N as a possibility due to the extreme way it is usually described by so called experts. I am organizing a Silicon Valley Narcolepsy Awareness and Support group. The mission being to provide education about the spectrum of what Narcolepsy looks like, not just the extreme cases, and to provide a support group for those with Narcolepsy in the Bay area. I have no idea how many we are. I am currently checking out possible places to meet. Possibly a Kaiser hospital would lend a meeting room. Please post something here if you are interested.

Posted 04 November 2014 - 11:34 AM

Hi, This is Debra. I live in San Jose/Santa Clara area. I was diagnosed last February of 2014 with N. I am disgusted that it took so long to be diagnosed. I am a registered nurse. I never considered N as a possibility due to the extreme way it is usually described by so called experts. I am organizing a Silicon Valley Narcolepsy Awareness and Support group. The mission being to provide education about the spectrum of what Narcolepsy looks like, not just the extreme cases, and to provide a support group for those with Narcolepsy in the Bay area. I have no idea how many we are. I am currently checking out possible places to meet. Possibly a Kaiser hospital would lend a meeting room. Please post something here if you are interested.

doinmdirndest

Posted 30 September 2014 - 01:16 AM

i am told there is on the average but 1 narcoleptic in a city the size of reno, nevada, pop. 100,000 or so. i don't know how accurate this may be, yet if it's true it would explain much.

allison_flutegal

Posted 29 September 2014 - 11:47 AM

Sorry for the double post, it posted me as a guest. I have an account my name is: allison_flutegal (just in case this also shows up as guest, despite logging in again)

 

Hello all! I am a little late joining this convo but it seems to still be moving along. I am a PWN and C. I noticed one member in particular is near me...Guest_Michelle...I hope you still read this. Please send me a message about getting together. I live in San Mateo, and Belmont would be very easy for me to get to. I actually say I live in Bel Mateo   :P

 

For everyone else, I am still willing to find ways to meet up. I was diagnosed in May and definitely having a hard time adjusting sometimes. 

 

 

I am honestly SO surprised there isn't more information, organizations, and support groups in our area about our diseases considering Stanford is here on the peninsula and leading (if I am not mistaken) on sleep study research.


Posted 29 September 2014 - 11:46 AM

Hello all! I am a little late joining this convo but it seems to still be moving along. I am a PWN and C. I noticed one member in particular is near me...Guest_Michelle...I hope you still read this. Please send me a message about getting together. I live in San Mateo, and Belmont would be very easy for me to get to. I actually say I live in Bel Mateo  :P

 

For everyone else, I am still willing to find ways to meet up. I was diagnosed in May and definitely having a hard time adjusting sometimes. 

 

I am honestly SO surprised there isn't more information, organizations, and support groups in our area about our diseases considering Stanford is here on the peninsula and leading (if I am not mistaken) on sleep study research.

 

 


Posted 23 December 2013 - 10:04 PM

I'm in Sacramento, but travel to SF occasionally. I'd be interested in learning more about a group. Thanks!

 

Hi Niemie,

 

My daughter has narcolepsy and lives in Sacramento. Would you be interested in meeting up with her at to share your experience and challenges? I think it would be very helpful. Please let me know. My e-mail is jimsawyer15@yahoo.com.

 

Thanks,

 

Jim


Posted 05 November 2013 - 04:59 AM

Sorry, you can email me at budandcelia8373@gmail.com
Please do if you guys have a group

Posted 05 November 2013 - 04:57 AM

I hope this reply goes through, but fid you guys ever start a group? I m in desperate need of one. Im here in ssnta rosa, will to travel just for some people who I can relate to.

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