Old 07-23-2015, 06:09 AM #1 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default PLS study

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 pcernasov@mclean.harvard.edu
Nikki J is offline  
Old 07-23-2015, 09:13 AM #2 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: PLS study

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 is offline  
Old 07-24-2015, 07:28 AM #3 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: PLS study

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
Green Queen is offline  
Old 07-24-2015, 01:49 PM #4 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: PLS study

Great. When are you coming?
Nikki J is offline  
Old 07-25-2015, 06:53 PM #5 (permalink)
New Member
 
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Chris3274 Chris3274 is offline
New Member
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Default Re: PLS study

Hi Nikki: I emailed Paul. If I don't hear back Monday I'll call. I'm in.
Chris3274 is offline  
Old 07-25-2015, 06:59 PM #6 (permalink)
Senior Member
 
Join Date: 2014
City: Bridgetown
State: Western Australia
Country: Aus
Diagnosed: 10/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 592
Gembead is on a very distinguished road
Gembead Gembead is offline
Senior Member
Join Date: 2014
City: Bridgetown
State: Western Australia
Country: Aus
Diagnosed: 10/2014
Interest: I am a family member of someone with ALS/MND.
Posts: 592
Gembead is on a very distinguished road
Default Re: PLS study

Good on you Janelle , the more the merrier, love Gem
Gembead is offline  
Old 07-25-2015, 07:23 PM #7 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: PLS study

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 by Nikki J : 07-25-2015 at 07:28 PM
Nikki J is offline  
Old 07-25-2015, 09:38 PM #8 (permalink)
New Member
 
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Chris3274 Chris3274 is offline
New Member
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Default Re: PLS study

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 is offline  
Old 07-26-2015, 07:15 AM #9 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: PLS study

I thought NIH would have asked you to join the PLS study. Did they? The doctor for it is Dr Floeter who specializes in PLS and is an awesome human being. https://www.clinicaltrials.gov/ct2/s...cr=Open&rank=1
NIH pays expenses ( at least they do for the study I am in)
Lots of interesting things going on at MGH for sure!
Nikki J is offline  
Old 07-26-2015, 12:12 PM #10 (permalink)
New Member
 
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Chris3274 Chris3274 is offline
New Member
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Default Re: PLS study

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.
Chris3274 is offline  
Old 07-26-2015, 01:54 PM #11 (permalink)
Nikki J's Avatar
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 6,978
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: PLS study

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!
Nikki J is offline  
Old 07-28-2015, 08:11 PM #12 (permalink)
Member
 
Join Date: 2011
City: Scio
State: OR
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with UMND/PLS.
Posts: 245
old dog is on a distinguished road
old dog old dog is offline
Member
Join Date: 2011
City: Scio
State: OR
Country: US
Diagnosed: 08/2011
Interest: I have been diagnosed with UMND/PLS.
Posts: 245
old dog is on a distinguished road
Default Re: PLS study

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.
old dog is offline  
Old 07-29-2015, 01:35 AM #13 (permalink)
New Member
 
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Chris3274 Chris3274 is offline
New Member
Join Date: 2014
City: Fallbrook
State: Ca
Country: US
Diagnosed: 01/2014
Interest: Other
Posts: 38
Chris3274 is on a distinguished road
Default Re: PLS study

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!
Chris3274 is offline  
Old 07-29-2015, 03:46 AM #14 (permalink)
Green Queen's Avatar
Very Helpful Member
 
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Green Queen Green Queen is offline
Very Helpful Member
Green Queen's Avatar
Join Date: 2015
City: By the beach
State: Western Australia
Country: AUS
Diagnosed: 4/2016
Interest: I have been diagnosed with another Motor Neuron Disease.
Posts: 1,294
Green Queen is on a very distinguished roadGreen Queen is on a very distinguished road
Default Re: PLS study

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
Green Queen is offline  
Old 08-22-2015, 01:14 PM #15 (permalink)
New Member (Say Hi)
 
Join Date: 2013
City: Flower Mound
State: texas
Country: US
Diagnosed: 11/2013
Interest: I have been diagnosed with UMND/PLS.
Posts: 8
Eydie67 is on a distinguished road
Eydie67 Eydie67 is offline
New Member (Say Hi)
Join Date: 2013
City: Flower Mound
State: texas
Country: US
Diagnosed: 11/2013
Interest: I have been diagnosed with UMND/PLS.
Posts: 8
Eydie67 is on a distinguished road
Default Re: PLS study

I have also emailed Paul and no response.
Eydie
Eydie67 is offline  
Closed Thread

Tags
als, boston, brain, grant, hours, mri, paraplegia, pls, volunteers


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
B-12 Study BlueandGold ALS Drug Trials 62 11-07-2015 08:19 PM
Lunasin Study,Anti-Epilectic Drug Study, BioMarker Study maryhahnward ALS Research News 6 01-23-2015 05:56 AM
New clinical study (als) sazzlah ALS Drug Trials 2 03-03-2014 04:53 PM
PLS study at NIH Nikki J General Discussion About PLS 4 02-16-2014 07:17 AM
Biomarker Study momap53 ALS Research News 2 02-03-2012 02:48 PM
Biomarker study... TedH5 ALS Drug Trials 0 01-23-2012 12:22 PM
Dexpamipexole Study Bhappy ALS Drug Trials 13 08-19-2011 09:53 PM
COQ 10 study being released LindaB Welcome New Members - Say Hello 2 04-05-2008 04:36 PM
New study at UM pfowler44 Current Caregivers (CALS) 7 03-23-2008 01:11 PM


All times are GMT -5. The time now is 09:42 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016