Saturday, October 27, 2012

November Meeting Reminder

The Next Meeting of the
Midwest Narcolepsy Supp0rt Gr0up
is scheduled for
Saturday, November 3, 2012
  10:30 am - 12:00 noon
at NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956 - Evanston Hospital
 (ask for directions at the Information/Concierge desk)     
This Meeting will be an open forum discussion on Narcolepsy and living with Narcolepsy
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.
For those who can't join us in person, the conference phone is:
866 249 2022 code 4897648210#

Wednesday, October 24, 2012

27th Annual Narcolepsy Network Conference Attendee Notes - One Person's Observations

The Conference was different this year, viewed from a different perspective because I  volunteered at the conference and did my best to help in planning and setting things up. I got to see how much work went into it, how early everything started (meetings started as early as January/February/March) and how much still had to be done at the last minute. I can tell you, the men and women who have done this for years deserve medals of valor for having put together some amazing programs through the years and this years conference was no exception.

There were a wide variety of sessions offered ranging from crafty sessions for the young and young at heart to the more medically focused sessions to learn the latest advances in research to less medical but none the less helpful sessions like "How to make the most of your doctors visits".

Every time slot had the potential for four or five different sessions making it virtually impossible for you to get to everything. I had my husband and  my daughter there and they helped cover sessions, but we still didn't see them all (we weren't interested in them all either).

There was even a quiet room set up with cots for those who absolutely couldn't function any longer without a nap. I can vouch for the fact that the cots were quite comfortable but they could have used a couple more of them as well as a couple more blankets.

We took full advantage of all of the activities we could by going to dinner in Little Italy at Mama Santa's on Friday with about 8 to 10 of our new best friends and had some delicious food and a wonderful time. On Saturday, we went on the NAUTICA QUEEN dinner cruise where the service was fantastic, the food adequate, the company superb and I discovered that I was claustrophobic. Too many people with no place to go got very old after three hours. I was very ready to get off the boat.


The hotel was also very nice. And you couldn't beat the price.

As with anything, nothing is perfect and there are always things that can be improved. The food was not the best - desserts were very nice but you can't live on deserts (the chocolate bomb was very good). We were not close to alternate food options so we just ate what was offered.


Overall, I felt the conference was a huge success. The date for next years conference has not been announced, but the location has been.

The 28th Annual Narcolepsy Network Conference is planned to be held in Atlanta, Georgia!! 

We hope to see you all there!!

Anyone who attended, please feel free to add their thoughts by posting comments here.

Tuesday, October 9, 2012

Car Pool Reminder

The Conference is fast approaching and if you need a ride to Cleveland to attend the Narcolepsy Network conference October 19 - 21, and you are local to southeast Wisconsin or northeast Illinois, we may have a solution for you!

The plan is to rent vans and drive (we have non-narcoleptic volunteers!) to Cleveland. Each van can seat six comfortably and seven slightly more cozily. With the cost of the van and gas, it would be $80/person round trip. (If we have fewer people we will rent SUV's or something less expensive and adjust the cost.)

If you'd like to participate, please send us an email at midwestnarcolepsy [at] gmail [dot] com as soon as possible. We need to know who is interested by October 13, 2012 in order to arrange for the vans and drivers.

Thank you!