kimberlyaz

San Antonio, TX area

7 posts in this topic

I'm trying to start a support group in the Alamo City -- waiting to hear from someone at NN to help me get started.

Any other persons with Narcolepsy here in Spurstown that would be interested in helping organize or just in attending the meetings?

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I'm thrilled to announce that we have a date and time for our first meeting!

Thursday, June 26th

5-6 pm

at the offices of Neurology Neurophysiology, PA

540 Madison Oak

Suite 620

San Antonio, TX 78258

We are open to all residents of San Antonio, TX and the surrounding areas that have been diagnosed with the neurological Sleep Disorder known as Narcolepsy. Family members and/or support persons are also welcome.Our aim is to educate, to advocate, and to support. The group, which is patient-led, will hold regular education/support meetings for members and families with presentations and discussions on topics that members want to see. Each meeting will include some social time as well. We will also examine any opportunities that we might have to increase public awareness of Narcolepsy.One key to our success will be member involvement -- input about the topics that are relevant to you. Members with talent or resources in any of these subject areas are encouraged to share their expertise and experience with the group.Members of this Meetup are encouraged (but not required) to join the Narcolepsy Network, a national non-profit patient support organization founded in 1985.

For a map, to RSVP, and to learn more visit our group at http://sleepdisorders.meetup.com/65/

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FYI --

We didn't have any response to our first meeting, so I decided that we'd take the summer off and try to get started again in the fall.

I also think that the reason we didn't get any response was that we are trying to reach the people with Narcolepsy instead of trying to reach sleepy people and help them get diagnosed.

I'm not quite sure what the next angle will be, but it will be something that is more educational/informative than support-oriented. I think people view a support group as a place where people sit around and cry together. That's not what I want to convey -- so I think giving an educational lecture on being "tired all the time" will bring in more people, give them tools to talk to their doctor and facilitate their diagnosis (whatever it may be). Then those who REALLY have Narcolepsy will see the value and come back for support.

If any of you have started a support group in other states I'd love to know how you drummed up attendance at your meetings.

K

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Hi Kimberley,

I hope I spelled your name right -- if not, my aplogies. I'm newly diagnosed with narcolepsy & would love to connect with others that've gone through what I have. I'm interested in support, education, or whatever.

Unfortunately, I don't live in San Antonio -- I live in north Austin. But I'd love to meet someone half way between (perhaps San Marcos?) on a weekend day to talk. Whaddayathink? I'm very glad for this website connection in the meantime.

Hopefully, Marie Edwards

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We tried to have a few meetings in San Antonio, set up a meetup group, contacted Sleep Labs & Sleep Docs in town to publicize them -- but never got any attendance.

I've since moved out of TX to North Carolina, so as far as I know this group is no longer.

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Hi, my name is Dottie. I am around 100 miles from San Antonio and I would like to know narcoleptics and/or their families. I am interested in their treatment & what the outcomes have been.

Also, I am interested in the community or individual response to the family and/or the narcoleptic. I am not writing a paper and I am not treating Narcoleptics. I would also like to know of Narcolepsy specialists you would reccommend.

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Hello!!! My name is Erin, I live in Canyon Lake, TX, just 30 minutes north of San Antonio, TX. I was diagnosed with Narcolepsy in 1998, and did a second study in 2012 that included a blood test confirming my particular case is genetic. I've been trying to find a local group to join for Narcolepsy support of patients and their families. I've had no such luck. I would love to meet up for coffee, or lunch or try to do what was originally intended and posted by Kimberly, (I think that was her name, sorry if I'm wrong). Please contact me here or directly at [email protected] I am also going to create a group on the Meetup app, in hopes of finding more of us. I really need to find other people who can understand and relate. If you have kids with Narcolepsy you are also welcome to reply. I'm also in the process of having one of my own children tested for Narcolepsy.

I look forward to hearing back from everyone!!!!

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