Tuesday, October 3, 2017

October Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, October 7, 2017

  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsymedication, diet, etc. 
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

This is our last meeting before the conference on October 27-29. We would be happy to share as much information as possible if you have questions.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Wednesday, September 6, 2017

September Meeting/Picnic Reminder

The Next Meeting of the
Midwest Narcolepsy Support Group
is our 
8th Annual Family & Friends Picnic
scheduled for
Saturday, September 9, 2017
11:30 AM until 5:00 PM
at
Skinner Park
check http://www.chicagoparkdistrict.com/parks/skinner-park/ for directions.

(Sorry, but the phone lines will be down for the picnic, in case anyone was wondering)

Street parking is available.
Sandwiches and beverages are provided by generous donation from the Narcolepsy Network. 
Feel free to bring your favorite dish to share. 


We hope to see you there!!

Wednesday, August 23, 2017

September Picnic Details

The Next Meeting of the
Midwest Narcolepsy Support Group
is our 
8th Annual Family & Friends Picnic
scheduled for
Saturday, September 9, 2017
11:30 AM until 5:00 PM
at
Skinner Park
check http://www.chicagoparkdistrict.com/parks/skinner-park/ for directions.

(Sorry, but the phone lines will be down for the picnic, in case anyone was wondering)

Street parking is available.
Sandwiches and beverages are provided by generous donation from the Narcolepsy Network. 
Feel free to bring your favorite dish to share. 


We hope to see you there!!

(another reminder will be posted a couple of days before the event!)

Thursday, August 3, 2017

August Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, August 5, 2017

  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
******Meeting Room 1711 Walgreens - Evanston Hospital****** 
NOTE: ROOM CHANGE
At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsymedication, diet, etc. We will also discuss details regarding our 
8th Annual Member, Friends and Family Picnic
(in lieu of a September meeting)
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Tuesday, June 27, 2017

July Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, July 1, 2017

  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsymedication, diet, etc. 
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Tuesday, June 13, 2017

DNA study change

Dr Canam has advised one of our members that the university has been able to revise his study permit to allow for people to take samples by themselves and send them in by mail. 

So if you are interested in participating, please contact him by email (tcanam@eiu.edu) and he will be able to contact you about participating in the study. 

Monday, June 5, 2017

June Meeting Phone Snafu

Apologies to all who may have tried to call in to Saturday's Meeting. Due to scheduling conflicts and personal emergencies, the phone did not make it to the meeting room (we tried, we really did!). A notice was put on our facebook page but may have been missed.

In the future, if you are having problems making a connection, please check our facebook page for information.


Thank you for your continued patience and support -

Midwest Narcolepsy Support Group
Midwest Narcolepsy Support Group on Facebook

Thursday, June 1, 2017

June Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, June 3, 2017

  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsymedication, diet, etc. 
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Wednesday, May 10, 2017

In Regards to the DNA Research Study

Dr Canam has advised members of the following:

Sample collection through universities (like EIU) is strictly regulated.  ... current permit does not allow for people to take samples by themselves and send them in by mail. But, Dr Canam is going to ask the institutional review board if it is possible to make a change to his permit to allow this.

So if you are interested in participating, please contact him by email (tcanam@eiu.edu) so that he will know how many are interested and he will be able to contact you if the regulations change.

We apologize for any confusion our posting has caused.

Saturday, May 6, 2017

May Meeting Overview

Research Study Information

At today's meeting, Dr. Thomas Canam, Associate Professor, Department of Biological Sciences, Eastern Illinois University, attended as a guest speaker.

He discussed a study he is involved in titled: 

Sequence variation of the HLA gene in people suffering from narcolepsy and associated disorders.

Participants are asked to provide basic information (age, gender, narcolepsy symptoms) and provide a swab of the inside of the cheek to allow extraction of DNA to view variations in the gene that has been identified as relating to narcolepsy/cataplexy.

If you were unable to attend the meeting, but would like to participate in the study OR would like additional information about the study, feel free to contact Dr. Canam via email (tcanam@eiu.edu) or phone (217-581-6608).

Thank you to all who attended the meeting (in person or via conference phone).

When the study has been completed, we have invited Dr. Canam to return to a future meeting to discuss his findings.


***** Please note that the email address for Dr. Canam was listed incorrectly and has been corrected.


Wednesday, May 3, 2017

May Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, May 6, 2017

  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsy, medication, diet, etc. We will also have a representative from Eastern Illinois University who wants to speak to us about research being conducted concerning the genetics associated with Narcolepsy and Cataplexy and explaining how we could help with their research, if we would like to participate.
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Wednesday, March 29, 2017

April Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, April 1, 2017
  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsy, New Year's Resolutions, etc
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 7432626#
Please note that we have a NEW PASSCODE
We hope to see (or hear from) you on Saturday!!

Saturday, March 11, 2017

Suddenly Sleepy Saturday Event Summary -

Our
Suddenly Sleepy Saturday Event
was both informational and fun!
Thanks to all who attended.

A special thanks to our Certified Yoga Instructor,

Diane Rouse

for graciously donating her time and expertise.

Friday, March 10, 2017

Final Reminder for Suddenly Sleepy Saturday Event

Here is the last reminder I will send regarding our Suddenly Sleepy Saturday 2017 Event!!

March 11, 2017

11:00 am - 12:30 pm

Evanston Hospital

Room 1602 - Women's Hospital

(use the elevator by the Gift Shop)

Instead of Walking in the (possible) cold Chicago weather,

we will be having a "Gentle Yoga" session

to help us stretch, strengthen and relax 

 

Wear comfortable, loose fitting clothing

Bring a yoga mat if you want to (and have one)

[Don't worry if you don't have one or if you have mobility issues.

Our instructor is anxious to help you adapt the activity to your skill and comfort level]

 

Afterwards, we will have brunch or lunch and spend some time socializing

 

Here's hoping we see you there! 

Please Join Us for this Fun Activity 

Monday, March 6, 2017

Suddenly Sleepy Saturday Event Reminder

Suddenly Sleepy Saturday

March 11, 2017

11:00 am - 12:30 pm

Evanston Hospital

Room 1602 - Women's Hospital

(use the elevator by the Gift Shop)

Instead of Walking in the (possible) cold Chicago weather,

we will be having a "Gentle Yoga" session

to help us stretch, strengthen and relax 

 

Wear comfortable, loose fitting clothing

Bring a yoga mat if you want to (and have one)

[Don't worry if you don't have one or if you have mobility issues.

Our instructor is anxious to help you adapt the activity to your skill and comfort level]

 

Afterwards, we will have brunch or lunch and spend some time socializing

 

Please Join Us for this Fun Activity 

Wednesday, March 1, 2017

March Meeting Reminders

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, March 4, 2017
  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsy, New Year's Resolutions, etc
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Due  to technical difficulties, we will NOT have a conference line available for this meeting.
We hope to have these problems resolved prior to our April meeting.


We hope to see you on Saturday!!



******************************************************************


Suddenly Sleepy Saturday

March 11, 2017

11:00 am - 12:30 pm

Evanston Hospital

Room 1602 - Women's Hospital

(use the elevator by the Gift Shop)

Instead of Walking in the (possible) cold Chicago weather,

we will be having a "Gentle Yoga" session

to help us stretch, strengthen and relax 

 

Wear comfortable, loose fitting clothing

Bring a yoga mat if you want to (and have one)

(Don't worry if you don't have one or if you have mobility issues.

Our instructor is anxious to help you adapt the activity to your skill and comfort level)

 

Afterwards, we will have brunch or lunch and spend some time socializing

 

Please Join Us for this Fun Activity 

Wednesday, February 15, 2017

Suddenly Sleepy Saturday Event

Suddenly Sleepy Saturday

March 11, 2017

11:00 am - 12:30 pm

Evanston Hospital

Room 1602 - Women's Hospital

(use the elevator by the Gift Shop)

Instead of Walking in the (possible) cold Chicago weather,

we will be having a "Gentle Yoga" session

to help us stretch, strengthen and relax 

 

Wear comfortable, loose fitting clothing

Bring a yoga mat if you want to and have one 

(Don't worry if you don't have one or if you have mobility issues.

Our instructor is anxious to help you adapt the activity to your skill and comfort level)

 

Afterwards, we will have brunch or lunch and spend some time socializing

 

Please Join Us for this Fun Activity 

Saturday, February 4, 2017

TECHNICAL DIFFICULTIES!!!!

 Because we are in a different room we are unable to connect to the phones.  We are sorry for any inconvenience. This should be fixed next month. Thank you very much.

Thursday, February 2, 2017

February Meeting Reminder


Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, February 4, 2017
  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201

***** Burch G18 - by the Women's Hospital - Evanston Hospital*****

(NOTE: This is a room change. If you need directions, ask at the information desk.)

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsy, New Year's Resolutions, etc
It is open to ALL - patients and their "Support Team" members.
We will also be discussing Suddenly Sleepy Saturday (March 11)!!
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 8283408#

We hope to see (or hear from) you on Saturday!!

Saturday, January 14, 2017

With Heartfelt Sympathy

Boris A. Vern, MD, PhD, a longtime Neurologist/Narcolepsy Sleep Specialist at the UIC Center for Narcolepsy, Sleep and Health Research and UIC Sleep Science Center passed away on Thursday, 1/12/2017, after a hard fought battle with cancer.

He was a brilliant, most beloved physician, researcher, and friend who will be sorely missed by his patients and all who knew him.

For those of you in the Midwest Narcolepsy Support Group who were patients of Dr. Vern and would like to pay your last respects to the Vern family, I’m sure they would appreciate to know how much he was loved and the positive, life-changing impact he had on your lives.

Muzyka Funeral Home
2157 W Chicago Avenue
Chicago, IL 60622
(773) 278-7767
Visitation Service: 3:00-5:00pm this MON, 1/16/2017

Thursday, January 5, 2017

January Meeting Reminder

Our next meeting of the
Midwest Narcolepsy Support Group 
is scheduled for

Saturday, January 7, 2017
  10:30 am - 12:00 noon
at
NorthShore University HealthSystem
Evanston Hospital
 2650 Ridge, Evanston, IL 60201
Meeting Rooms G952-G956, - Evanston Hospital 

At this Meeting we will have an open discussion on Narcolepsy and living with Narcolepsy, New Year's Resolutions, etc
It is open to ALL - patients and their "Support Team" members.
Join us, your input is invaluable.

 Feel free to join us on the phone if you can't join us in person. 
The conference phone is:

1-866-374-5135

~ Passcode ~ 8283408#

We hope to see (or hear from) you on Saturday!!