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
The CFC or Combined Federal Cam-paign is a fundraising campaign the Federal Government offers its employ-ees to participate with each year. It begins Sept 1st and goes through Dec 15th. Federal employees are allowed to pick from over 200 registered nonpro-fits to contribute to. Many CFC fairs will be held at Federal facilities throughout the campaign. This allows employees to learn about the nonprofits and make their selections.
Please let friends and family members who are Federal employees know they can choose the Spastic Paraplegia Foun-dation to donate to. The SPF CFC num-ber is 12554. The following are exam-ples of Federal employees: law enforce-ment, mail personnel, VA or Veteran’s Administration employees, Medicare, Medicaid, military and many types of governmental jobs. If donors want to know more, please have them log on to
If you have any questions or sugges-tions, please contact Jim Sheorn at email@example.com or 615-479-7369.
Please help us generate more financial resources for research.
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 a cure is right within reach and we ask you to please join us in reaching by making a tax deductible donation.