“Science has come a long way in the past several years in discovering the cellular processes that are affected by PLS and HSP. I look forward to the day that we have a cure.”
- Mark Weber, Esq., chairman of the SPF Research Grant Committee.
The Spastic Paraplegia Foundation is dedicated to advancing research and ultimately finding the cures for two closely related groups of neurodegenerative disorders termed Hereditary Spastic Paraplegia and Primary Lateral Sclerosis. These conditions share the common pathologic feature of degeneration principally of the upper motor neurons.
The impetus for forming the Foundation was inspired by the accelerating pace of research on these conditions. Dramatic breakthroughs have been made in the past decade, catapulting these conditions from being poorly understood to being on the threshold of significant treatment and cures.
Scientists have unraveled many of the riddles regarding the complicated biochemistry of these diseases. Many HSP genes have now been discovered as well as a gene for PLS. Animal models for these disorders are underway. These will enable investigators to uncover the biochemical processes that cause nerve degeneration and identify and test therapy targets.
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.