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
Giving Tuesday was a great start on our year end goal. So far we have raised over $37,000. Our anonymous donor will match every donation dollar for dollar up to $175,000 until January 15, 2017. That's right, every donation you make will be doubled so you will receive twice as much satisfaction and double the number of people you will help with your wonderful and most appreciated generosity. This is 40% more than was matched last year so we are asking everyone to stretch your giving as well to make sure we use every nickel of this match. We can do it!
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.
93 cents of every dollar you donate goes into our mission of research and service. 4 cents goes to fundraising and 3 cents goes to data management and general expenses. Our all volunteer Scientific Advisory Board makes sure that we are supporting only the very best research projects on the planet. The Spastic Paraplegia Foundation is an all volunteer run foundation. Our highly skilled staff, Scientific Advisory Board, Medical Advisors - CPA, Attorney, President, Board Members - all of us are working hard every day probono because we strongly believe in this cause. We know we can get to our goal if we all do our very best. We ask you to please join in our efforts by making a donation.