The Spastic Paraplegia Foundation is excited to share the results of a worldwide survey conducted in June and July 2025. Nearly 800 patients diagnosed with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) from 31 countries; participated in this important initiative.
The Spastic Paraplegia Foundation, Inc. (SPF) designed the survey to gather meaningful information about living with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) directly from those most affected by these chronic and rare conditions. These insights will guide discussions at the 2025 SPF Annual Conference in Washington DC and help shape future research priorities.
The survey results are available to everyone, including researchers and organizations capable of advancing medical discoveries, treatments, and therapies to improve the quality of life for our community. These audiences may include representatives from the NIH (National Institutes of Health), FDA (Food and Drug Administration), C-PATH (Critical Path Institute), and others.
Starting at the 2025 SPF Annual Conference in Washington DC, we will discuss these findings, share resources, and explore new ways to advance research and support. Your participation and advocacy are vital as we continue to build a stronger, more informed community.
Click the button below to download a 48 page summary of the survey.
Our Impact since our inception...
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Dollars Raised
Over 12,000,000 dollars for research!
