San Antonio, TX area
Posted 30 April 2008 - 09:46 PM
Any other persons with Narcolepsy here in Spurstown that would be interested in helping organize or just in attending the meetings?
Posted 30 May 2008 - 12:09 PM
Thursday, June 26th
at the offices of Neurology Neurophysiology, PA
540 Madison Oak
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/
Posted 11 August 2008 - 04:36 PM
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.
Posted 03 September 2008 - 06:50 AM
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
Posted 14 September 2009 - 08:27 PM
I've since moved out of TX to North Carolina, so as far as I know this group is no longer.
Posted 01 September 2010 - 05:03 PM
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.