The Spastic Paraplegia Foundation offers free tools and resources to help you find the answers you need.
The SPF has partnered with NEALS (Northeast ALS) consortium to create a list of clinics and physiciansacross 27 states and 3 Canadian provinces that are treating PLS and/or HSP patients and welcome new ones.
SP Foundation State Ambassadors are available to help you connect with local resources and events in your area. Find out who your current state Ambassador is and get their contact information here.
Post questions, get answers and meet new people. An excellent way to ask about drugs, therapies, progression and experiences. Individuals with an interest in both PLS and HSP are welcomed to join.
The community forum offers a wide variety of information, advice and answers to questions that many PLS and HSP patients have. It’s also a great resource for caregivers wanting to learn more about the diseases and how they can help a loved one.
See all the past SP Foundation Synapse Newsletters published since 2008. The newsletter is published quarterly and provides information on news, research, practical advice and a summary of local activities.
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.