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Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
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City
Boston
For those of you who have not yet found it there is a group that posts research articles on MND there is probably more on PLS and HSP than ALS
If you are interested either indicate below or pm me and I will pm you a link. It is a closed group and once you ask to join expect a pm ( check message requests which is new instead of the other folder on FB) you will not be approved until you pm back as some information is sent through pm if you ask for it
 

DreamsEnd

Distinguished member
Joined
Jan 24, 2014
Messages
445
Reason
Lost a loved one
Diagnosis
01/2014
Country
US
State
AZ
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Cottonwood
Nikki,

I've long thought you're such an amazing person and should have said it before!

Sherry
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Thanks Sherry but to be clear it is not my group. I am a member and I was seeing a lot of information that would interest the PLS/ HSP group. I asked the admin for permission to post this. A couple of members here are already in the group too
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,072
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I am a member. I highly recommend joining. It's very heartening to see just how much research is being done for a variety of neurologic conditions- all of which have spillover benefits, even if not directly related to MND.
 

GregK

Moderator emeritus
Joined
Jan 29, 2013
Messages
2,775
Reason
PALS
Diagnosis
11/2012
Country
US
State
CO
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Colorado Springs
Pls send me the link, Nikki
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
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Boston

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
City
Fallbrook
Hi Nikki: Please send me the link.
 

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
City
Fallbrook
Hi Nikki:
You sent me the link to the Facebook Group and I opened it from my work
computer. Since I am not too computer savvy I would like to know where I
go on the forum to get that link again from my home computer.
Thanks,
Chris
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi I just re-sent it. But for future if you look at the right side of any forum page if you are signed in you will see near the top your user name and below that you should see notifications private messages and requests. Clicking on private messages will take you to your message folder. Messages stay until you actively delete them
 

Jeanau

Distinguished member
Joined
Jan 21, 2015
Messages
336
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Pittsburgh
Nikki, I just checked out the page through the link you posted. It seems to be very strange and somewhat weird to me. Most of the entries seem to be about herb supplements. Am I missing something?
Audrey
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I posted no link to the group I referenced. Did you pm me I do not remember? I am only sharing it privately. Will send you a link whatever you were looking at was not it. It is a private group
 

Jeanau

Distinguished member
Joined
Jan 21, 2015
Messages
336
Reason
PALS
Diagnosis
12/2014
Country
US
State
PA
City
Pittsburgh
Thank you!
Audrey
 

Grace89

Forum Supporter
Active member
Joined
Nov 17, 2015
Messages
60
Reason
PALS
Diagnosis
11/2015
Country
US
State
Over the rainbow
City
Somewhere
I would like to be in the group. Thanks!
 

Gorby

Distinguished member
Joined
Nov 5, 2015
Messages
108
Reason
DX UMND/PLS
Diagnosis
08/2015
Country
CA
State
BC
City
Vancouver
Nikki - I would appreciate the link. Thanks.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,897
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Just sent links. If you have asked and did not get one let me know
 
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