FinallyAwake

Support Group In Or Around Sf Bay Area

36 posts in this topic

Optional={option} and content=Contact Mali Eisen at Stanford University -- narcolepsy research group headed by Dr,. Mignot -- surely, she will know about a group if one exists.

Looking for support in or around the Peninsula/Sf Bay Area.

San Francisco to San Jose

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Optional={option} and content=Contact Mali Eisen at Stanford University -- narcolepsy research group headed by Dr,. Mignot -- surely, she will know about a group if one exists.

Thank you very much.

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Thank you very much.

Hey, I'm from the Bay Area specifically Santa Cruz maybe if there is no group we could maybe start one?

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Hey, I'm from the Bay Area specifically Santa Cruz maybe if there is no group we could maybe start one?

Hey, I live in SF and I'd be interested in starting a group too if there isn't one. I've looked around a bit and have found one.

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Hey, I live in SF and I'd be interested in starting a group too if there isn't one. I've looked around a bit and have found one.

What group did you come across? I have idiopathic hypersomnia and would also be interested in a support group.

Thanks!

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Hey, I live in SF and I'd be interested in starting a group too if there isn't one. I've looked around a bit and have found one.

Cool if you could potentially pass on that information of the group? I would be super appreciative. I heard about one in SF and contacted one person but never heard word of any actual meetings. But anyways if you could pass on the info my email is kayra.fails@gmail.com Thanks a lot!

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

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Also interested. I'm in Sacramento. East Bay (or Sacramento) would be ideal, but I'd be interested no matter where you set up.

Just diagnosed two weeks ago. Suddenly everything is making sense!

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Also interested. I'm in Sacramento. East Bay (or Sacramento) would be ideal, but I'd be interested no matter where you set up.

Just diagnosed two weeks ago. Suddenly everything is making sense!

Totally get that. I also am in Sacramento but would be interested!

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Looking for support in or around the Peninsula/Sf Bay Area.

San Francisco to San Jose

I live in the SF Bay area (San Bruno) and I am sper interested in attending a support group if one exists or even interested in helping start a group

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Totally get that. I also am in Sacramento but would be interested!

Hi Dakota! Just saw this today. Haven't been very good at checking these! I've met one other woman in Sac with N--she and I got together a few months ago to chat--super helpful. My neuro gave me the info for the director of the Sutter Sleep Center, and suggested I contact him if I wanted to try to get a group together--they could provide us with a place to meet, and possibly a staff member to meet with us? I never followed up on it, but maybe I should.

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What group did you come across? I have idiopathic hypersomnia and would also be interested in a support group.

Thanks!

I am looking for a support group, (or just someone to email or talk to)for my 12 year old daughter who has pretty severe narcolepsy with cataplexy. She feels alone and would really like to share her feelings with another 12 year old girl who might have similar issues.

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What group did you come across? I have idiopathic hypersomnia and would also be interested in a support group.

Thanks!

I am looking for a support group, (or just someone to email or talk to)for my 12 year old daughter who has pretty severe narcolepsy with cataplexy. She feels alone and would really like to share her feelings with another 12 year old girl who might have similar issues.

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I live in Belmont, CA and would love to attend a support group. San Francisco would be too far for me to drive, so if there was one within 10-15 miles of Belmont

it would be great. 

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i live in napa.  is there a support group in 100 mile radius?

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I am trying to get Narcolepsy diagnosed at Kaiser, Pleasanton.  Are there any online support grps around this area?  I am disabled with Neurology problem. Also have Adult ADD. Am positive for home test , Mild Sleep Apnea.  Mild is not treated.  I am offered an overnight test in the hospital, but am so weak, dizzy, EDS, I wonder if at age 73, I am able to get in to the hospital and get a test completed.  Is it not possible to get a diagnosis without the hospital test?

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I must clear it with Susie; but perhaps a group of 8 or less could meet @ our place. those who would not find napa a sub-optimal location in which to meet, SOUND OFF so I know it's time to move ahead w/ the idea.

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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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Sorry, you can email me at budandcelia8373@gmail.com

Please do if you guys have a group

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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

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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.

 

 

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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.

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