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 ( 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 ( 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
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:


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