HSP and PLS Survey

Let Your Voice Be Heard, See Why Below!

Dear SPF Community;

The Spastic Paraplegia Foundation, Inc., (SPF) is conducting a survey to collect valuable information about living with Hereditary Spastic Paraplegia (HSP) or Primary Lateral Sclerosis (PLS) from individuals and families directly affected by these chronic rare diseases. Your response is your patient-voice telling others about your challenges and the knowledge of your lived-experience that you face every day.  Collectively we will build a clear and strong message for pharmaceutical stakeholder engagement, key opinion leaders, and more effective research teams.

The insights gathered from this survey will play a crucial role in shaping future conversations for interventions and therapeutics, starting with discussions at the 2025 SPF Annual  Conference in Washington DC. The collective results will be available to everyone, including those capable of developing medical discoveries and researching treatments and therapies to improve the quality of our lives. These may include representatives from NIH (National Institutes of Health), FDA (Food and Drug Administration), C-PATH (Critical Path Institute) and others. By sharing your perspectives and lived experiences, you are helping to ensure that patient-voices are heard and considered in future research, development of treatments, and policy decisions.

Your participation is very important to all of us. More people taking this survey will result in stronger and more accurate statistics making a clear unified message that we do not have a therapeutic specifically approved for HSP/PLS. Please have as many families and friends that you know with HSP/PLS complete this survey. Information from every family member is essential as personal impacts and symptoms vary among families and patients. Thank you for taking the time to contribute to this vital effort and helping progress towards patient knowledge for a treatment or a cure. 

We will compile the survey results of all respondents, and there will be no personal identifiable information included.  SPF does NOT sell or distribute your information. SPF will reach out to you directly when a researcher, physician, stakeholder, or a representative from NIH and when other organizations are seeking specific information from you or seeks participants for a clinical or drug trial or study.  

Your being a member of our SPF community is essential in helping us get an accurate number of those struggling with HSP/PLS across the world, including those that do not know their SPG numbers, also known as "SPG Unknown".

But, you don't have to be a member of the SPF to take the survey. 

The benefits of joining SPF include finding like-minded people and long-lasting friendships that understand the struggles. We can talk about health issues and commonalities we face every day.  As a member, you will receive updates through our newsletter eblast/emails. We send research news updates, scientific and medical publications, and opportunities to participate in events and upcoming meetings, including dates for the next SPF TALKS zoom events. If you are not a member of SPF, please consider registering at no cost: BE A SPF MEMBER CLICK HERE

The survey should take 25 minutes of your time. Please click on "TAKE SURVEY" button below to begin. 

                                 The Survey Deadline is July 20, 2025.

Please email any questions, comments or concerns to information@sp-foundation.org, or should you need help completing the survey, we can schedule an appointment to help you complete it.

Your help is greatly appreciated in this very important work. 

Sincerely,
Greg Pruitt
President, Spastic Paraplegia Foundation, Inc.
sp-foundation.org