Our Sincere Apologies for this website being down over the last weekend. This was as big of a surprise to us as it was to you.
It turns out that the reason it was down is because our previous president who died 2 years ago set up our website name with a company who recently went out of business. As soon as they went out of business, all of the websites in their control faced the same fate as ours.
We had to trace the chain of DNS connections, correct the "A Pointer", set up a new DNS administrator and purchase the domain name in order to be up again. All this has now been done and we again apologize for any inconvenience or worry you may have experienced.
All the Best,
Frank Davis, President
Spastic Paraplegia Foundation
In 2015 almost a dozen HSP Patient Advocacy Organizations from all over the world met in Madrid Spain to join forces to establish an international connection and resource to make sure a first rate, well established and impeccable HSP Patient Registry is set up. This will allow our next Clinical Trials to go forward smoothly and effectively. Good communication channels have also been established so as to allow for a smooth flow of information among scientists and organizations such as The Spastic Paraplegia Foundation.
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.