Hi! I’m a student working on a project to make clear, accessible information for people living with neurodegenerative diseases and their families.

I’m trying to learn from people with lived experience so I can make the website genuinely useful. If you’re comfortable, could you share (anonymously) what you wish you had known earlier, or what information has helped you the most?

I would be grateful to hear general insights, such as:

• challenges you wish were explained more clearly
• resources that helped you
• things you wish families or caregivers understood better
• most memorable experiences with your condition.

I’m not asking for personal medical information—just general reflections that can guide me in building better educational content.

Thank you for your time and kindness.