Your Voice Matters: Help Us Understand and Improve Life With FND

At Not Defined by FND, we're on a mission to end stigma and bring awareness, advocate for research and treatments, and create conversations to bring needed changes and hope for all FND warriors.

But to do that, we need your help.

We’ve created a series of surveys — each one designed to listen directly to the voices of people like you: those diagnosed with FND, their loved ones, medical professionals, educators, and allies in the community.

These surveys are more than just data collection. They’re a chance for the FND community to be heard — to highlight real-world experiences, identify critical gaps, and help shape the tools, language, and policies that affect care and understanding of FND.

🔍 Why Are We Collecting This Information?

FND is often misunderstood, misdiagnosed, or overlooked. Our surveys explore:

• How long it takes to receive a diagnosis

• Challenges with accessing or affording treatment

• The knowledge level of medical professionals and educators

• What supporters experience while caring for someone with FND

• What the public understands — or doesn’t — about FND

• The most compassionate and accurate language for FND-related symptoms

• Which resources (books, websites, support groups) are most helpful

Each response builds a clearer picture of what the FND community truly needs — and where we must advocate for change.

📣 Who Can Participate?

There’s a survey for everyone:

• People diagnosed with FND

• Family members, friends, and other supporters

• Doctors, nurses, therapists, and mental health providers

• Students, professors, and education staff

• Members of the general public

• Anyone who wants to help improve support resources

🕒 It Only Takes a Few Minutes

Each survey is anonymous, easy to complete, and most take less than 10 minutes. You can fill out any or all that apply to you.

Your voice, your story, and your experience can help transform how FND is understood and treated — for thousands of people.

✅ Ready to Make a Difference?

Click below, find your group, and start sharing your insight: 👉 www.notdefinedbyfnd.org/ongoing-surveys

📢 And Don’t Forget to Share, Share, Share!

🗣️ The more voices we hear, the stronger our message becomes.

📚 Students — share with your classmates and teachers. 

🏢 Employees and employers — share with your co-workers. 

❤️ Friends and family — share with your networks, online and offline. 

📲 Share everywhere, with everyone, and ask them to share too!

We’ll also be promoting these surveys on our social media throughout the month — if you see a post, share it! Your repost could bring in a response that makes all the difference.

Every share helps us reach more voices. Every voice helps build a stronger, more compassionate future for the FND community. You never know who might be impacted by FND — your share might help someone feel seen, or encourage a professional to learn more.

Thank you in advance for your time, honesty, and support. Together, we’re building something better — one voice at a time.