Guiding principles behind the site
The original project was ambitious and generous. The ideas below are preserved, but presented in a more readable, modern structure.
People with Parkinson's have real expertise
Living with a condition day after day creates practical knowledge that is different from clinical knowledge, not less valuable than it.
Responsibility and agency matter
The goal is not to replace clinicians, but to help people become more active participants in observing, understanding, and managing their own symptoms.
Open data multiplies the chance of insight
Sharing data in a usable format makes it easier for more people to analyze it, challenge assumptions, and spot patterns others miss.
Open tools lower the barrier to participation
Simple measurement tools, surveys, and visualizations create more opportunities for people to contribute without specialized software.
A community of motivated participants can create momentum that large institutions alone often cannot sustain.
- More observers means more patterns spotted.
- Better self-tracking can improve conversations with clinicians.
- Clearer tools make participation feel possible instead of technical.