This material has been reviewed by Dr John Fink, M.D., SPF Medical Advisor. Please see Glossary to help with medical terms.
Please note: The information in this section is not intended to be taken as replacement for medical advice. Individuals should consult with a qualified health-care practitioner.
PLS and HSP affect individual people in different ways, and as a result, treatment programs will vary. Although there is no way to stop, slow or reverse the progressive disability of these disorders, there are therapies that can help enhance function and comfort and promote general physical and emotional well-being.
Your neurologist or physiatrist will develop an individualized program, often with consultation from other professionals. The treatment team may include an orthopedist, physical therapist, occupational therapist, speech and language pathologist, social worker, or psychologist. You are an important member of the team, too.
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.