Today I began my participation in a second PLS study, this one at Mass General in Boston, I live in NJ. Dr. Paganoni (pictured here with me) recently received the Virginia Sweeney Fellowship to study PLS from the SPF. 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 I volunteered to be a part of 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. My wife and I drove up the night before and stayed at the LaQuinta Inn in Somerville, MA which was comfortable. MGH reimbursed us for our room and they give you $150 for each scan so that covered our expenses for our trip. The scans are done at their imaging center in Charlestown, MA which was 2 miles from the hotel. It's a beautiful facility and parking was easy and accessible. The total time today at the imaging center was 4 hours. If you are interested in participating, you can contact Paul Michael Cernasov 617-726-1880 or firstname.lastname@example.org
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.