For Patients and Families
An SPG76 diagnosis can feel isolating — there are approximately 100 confirmed cases worldwide, with many more suspected undiagnosed. But you are part of a small, growing community: 17 people affected by SPG76, in 10 countries, have connected with the foundation.
Patient Network
Whether you were diagnosed recently or years ago, whether your symptoms are mild or advanced — we want to hear from you. Family members, and people still waiting for a genetic test, are welcome too.
Every person who comes forward makes the SPG76 community easier to find — for researchers, for funders and for each other — and helps show that people with SPG76 are known, connected and ready to take part if and when future studies open.
We reply to every message. We will keep you up to date on the research and let you know when there is a way to take part. The Patient Network Form asks for your name, email address and country; it does not ask for medical information.
Or email contact@spg76research.org.
All information you share is kept confidential and will only be used to connect you with relevant research opportunities and community updates. We will never share your personal information without your explicit consent. See our Privacy Policy for details.
¿Prefiere escribir en español? Escríbanos a contact@spg76research.org y le responderemos.
Preferisce scrivere in italiano? Ci scriva a contact@spg76research.org e le risponderemo.
Prefere escrever em português? Escreva-nos para contact@spg76research.org e responderemos.
Research You Can Take Part In
Dr. Ziv Gan-Or at The Neuro (McGill University) in Montreal, whose group was among the first to link the CAPN1 gene to SPG76, is leading an SPG76 natural history study. A natural history study follows how a disease develops over time across many people — when symptoms start, how they change, and how quickly. No single clinic sees enough people with SPG76 to answer those questions, so the research team is combining de-identified information from doctors around the world.
Why it matters: to know whether a future treatment slows or halts SPG76, researchers first need to know how the condition progresses without one. It also shows researchers and funders that the SPG76 community is known, connected and ready to take part if and when future studies open.
Download the one-page note below and give it to your neurologist. It explains the study and how your doctor can share de-identified clinical information — no names or dates of birth — directly with Dr. Gan-Or's team. There are no visits and no samples, and the foundation never sees or stores your medical information.
Download the note for your neurologist (PDF, 1 page)
For doctors: please email Dr. Ziv Gan-Or at ziv.gan-or@mcgill.ca with “SPG76 natural history” in the subject line. His team will send you a short data sheet. The foundation does not collect or hold any patient data, so please send information directly to the study team.
SP-CERN, a US research network for hereditary spastic paraplegia, runs its own natural history study, with research visits at its sites. To ask about it, email SP-CERN at spcern@childrens.harvard.edu — including if you live outside the US, as they work with research networks in Europe and Brazil.
The two studies are separate — you can do either, or both.
Your Care
The foundation does not provide medical advice. Your own doctor is the right person for questions about your diagnosis and care. Our FAQ for families suggests questions you might bring to your next appointment.