AdBlock Detected

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience and to help support our community please take a moment to disable your AdBlocker.

PLS study

Status
Not open for further replies.

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,364
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I copied this from a post in another group
PLS study, at Mass General in Boston, Dr. Paganoni recently received the Virginia Sweeney Fellowship to study PLS from the Spastic Paraplegia Foundation. MGH is one of a few facilities in the world to do a combined MRI-PET scan. They have been doing scans of healthy volunteers vs ALS patients for a number of years now. These scans produce ultra high definition of the brain images and they have seen inflammation in those patients with ALS. They believe this inflammation may be the cause and if they can eliminate or reduce it through medication they will be able to monitor it through these scans. MGH has received a grant to expand these scans to PLS and will be comparing the images vs the two previous groups. The study includes up to 5 (90 minute scans) over three years plus physical and mental examinations. I am the sixth PLS patient to participate with 3-4 more signed up. MGH reimburses for the room and they give you $150 for each scan. The scans are done at their imaging center in Charlestown, MA . It's a beautiful facility and parking is easy and accessible. The total time at the imaging center is about 4 hours a visit They need more volunteers, so If you are interested in participating, you can contact Paul Michael Cernasov 617-726-1880 or [email protected]
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
Thanks Nikki.
We aren't in your neck of the woods until next year, but I still contacted him. You just never know.
J x
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
Nikki you wouldn't believe it, they are 'very interested ' in having me take part in the study!
Look out America...you're gonna be invaded!
J x
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,364
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Great. When are you coming?
 

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
Hi Nikki: I emailed Paul. If I don't hear back Monday I'll call. I'm in.
 

Gembead

Senior member
Joined
Oct 11, 2014
Messages
592
Reason
Loved one DX
Diagnosis
10/2014
Country
Aus
State
Western Australia
Good on you Janelle , the more the merrier, love Gem
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,364
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Terrific Janelle and Chris. Chris, you go to NIH too I think ?maybe you can make a research tour of the East Coast!
 
Last edited:

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
I couldn't get a diagnosis and my uncle's cardiologist told me to apply
to NIH, UDC. I did and was accepted. It helped that both my parents
were alive and with my sister we made up a 4 model blood study. I
now go to UCSD (San Diego) Dr. Ravitz.
Thanks for posting the study. Nurown is in phase 11 trial at MGH.
I've been following that. Chris
 

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
I will contact them. Perhaps my being on the west coast is cost prohibitive. They paid my air fare in 2014.
i met with Dr. Floeter. She confirmed my diagnosis.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,364
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I know someone in the study I am in comes from the West Coast. We are in a pretty rare group but so are you!
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
243
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
Wow - thanks, Nikki. This is the most promising direction for a study that I've heard about. Being on the wrong coast, I don't know how I could participate but will watch for information with interest.
 

Chris3274

Active member
Joined
Apr 7, 2014
Messages
38
Reason
Other
Diagnosis
01/2014
Country
US
State
Ca
I'm going in November if my blood proves to be comparable with the dye that's injected.
I'll send that in this week. I'm in San Diego. They said they would reimburse me for
almost if not all the expenses to include the flight. Give em a call!
 

Green Queen

Very helpful member
Joined
Mar 30, 2015
Messages
1,294
Reason
DX MND
Diagnosis
4/2016
Country
AUS
State
Western Australia
I have been emailing the bloke Paul. Apparently they are full, but contact them anyway because they are looking at getting more funds to extend the study to include more people. Definitely call, the more people the better I reckon.
The reason he told me that is because we are trying to figure out when we are coming. I wonder how much of my flight they'll reimburse!
God bless, Janelle x
 

Eydie67

New member
Joined
Nov 30, 2013
Messages
8
Reason
DX UMND/PLS
Diagnosis
11/2013
Country
US
State
texas
I have also emailed Paul and no response.
Eydie
 
Status
Not open for further replies.
Top

AdBlock Detected

We get it, advertisements are annoying!

Sure, ad-blocking software does a great job at blocking ads, but it also blocks some useful and important features of our website. For the best possible site experience please take a moment to disable your AdBlocker.

I've Disabled AdBlock