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Nikki J

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Joined
Mar 22, 2012
Messages
16,334
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
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]
 
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
 
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
 
Great. When are you coming?
 
Hi Nikki: I emailed Paul. If I don't hear back Monday I'll call. I'm in.
 
Good on you Janelle , the more the merrier, love Gem
 
Terrific Janelle and Chris. Chris, you go to NIH too I think ?maybe you can make a research tour of the East Coast!
 
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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
 
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.
 
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!
 
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.
 
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!
 
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
 
I have also emailed Paul and no response.
Eydie
 
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