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Celebrating 2 Years of Not Defined By FND: Growth, Impact, and What’s Next



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Celebrating 2 Years of Not Defined By FND


Before celebrating where we are today, it’s important to recognize where we started.


To better understand who we are and what drives our mission, you can watch our introduction videos below. These videos were created at the very beginning of our journey — to explain the purpose behind Not Defined By FND and why this work matters.


They feature multiple voices from the FND community, including warriors and supporters, share a glimpse into our founder’s personal story and the drive behind building this foundation, and highlight the heart, goals, and vision of our organization.


🎥 Full Introduction to Not Defined By FND (8:38): 👉 https://youtu.be/6D-6HmaqBHM

⚡ Short Introduction Version (4:10):👉 https://youtu.be/oyoYCFokGO8


These videos reflect where we started — and why we continue to grow.


🎬 Watch Our 2-Year Story


🎥 Watch our full 2-year journey video (6:01): 👉  https://youtu.be/P-dHfIH9O7A

⚡ Short on time? Watch the highlights (2:09): 👉 https://youtu.be/l0Fsmx2vjj4



In March 2024, we started a movement.


Not Defined By FND officially became a 501(c)(3) nonprofit organization — built on lived experience, driven by purpose, and committed to improving awareness, education, and support for those affected by Functional Neurological Disorder (FND).


We didn’t start with a large team.

We didn't start with national recognition.

FND is still widely misunderstood.

But we started anyway.


Two years later, we’re proud to share how far we’ve come — and where we’re going next.


🌱 Advocacy in Action


From the very beginning, advocacy has been a priority.


In our very first year, we launched a petition to remove outdated and stigmatizing language associated with FND — because the words used in healthcare directly impact how patients are treated and understood.


We also created FND Medical Alert Cards to support safety and communication in emergency situations.


And we brought people together in real life, hosting:



These moments represent more than events — they represent visibility, validation, and progress.


📚 Expanding FND Education and Awareness


Education is one of the most powerful tools for reducing stigma and improving understanding of Functional Neurological Disorder.


We launched the FND Detective Series, a volunteer-led initiative focused on research and education.



In March 2025, we introduced our FND educational brochure, now available in 7 languages to increase accessibility worldwide.


Downloads to date:

  • English: 150

  • Portuguese: 3

  • Spanish: 3

  • Mandarin: 3

  • Russian: 1

  • Also available in Tamil and Swahili 


👉 That's 160+ total brochure downloads!


Each download represents someone choosing to better understand FND — a meaningful step toward awareness.


But we didn't stop there.


To further expand access, we also created:



Nothing flashy.

Nothing complicated.

Just clear, accessible information.


These videos break down FND into simple, easy-to-understand explanations — helping patients, families, and supporters make sense of a complex condition.


Eighteen videos.

Eighteen opportunities to replace confusion with clarity.

Eighteen steps toward reducing stigma.


Because understanding FND shouldn’t feel overwhelming — and it shouldn’t be impossible to explain.


🧰 Creating Tools That Empower Patients


Living with FND can be overwhelming — especially without the right tools.


That’s why we created practical, easy-to-use resources designed to support patients in real-life situations.


In June 2025, we launched the FND Starter Kit.


Created by FND warriors, for FND warriors.


  • 79 Starter Kits distributed so far


Each kit includes:

  • A personal welcome letter

  • Educational materials

  • Research and resource guides

  • Printable tools

  • A medical alert ID card


Because no one should be handed a diagnosis and left to figure it out alone.


In December 2025, we expanded our offerings with free patient tools:

  • Follow-Up Tracker – track symptoms, medication updates, lifestyle changes, and bring organized information to appointments

  • Visit Purpose Template – walk into appointments confident, organized, and heard


These tools help patients feel more prepared, organized, and confident in their care.


🤝 Building a Strong, Supportive Community


Community is at the heart of everything we do.


In January 2025, we launched the FND Empowerment Circle — our virtual support group.


  • 30 support groups hosted so far


Thirty spaces where individuals affected by FND could connect, share, and feel understood.


We also introduced the Connect & Inspire Series — designed to foster connection, creativity, and joy.


To date, this includes:


Not because games fix FND. 

But because community sustains people.


📖 Growing Libraries of Support and Research


We created two evolving, community-driven resources:



These are living libraries — continuously expanding as new research and community contributions are added.


📊 Listening to the Community: Our Ongoing FND Surveys


We’re not just sharing information — we’re gathering it.


We launched multiple ongoing surveys to better understand the real experiences, needs, and challenges of those affected by FND.


These surveys are designed for different audiences across the community, ensuring a wide range of voices are represented.


We are currently:

  • Conducting our first round of analysis for two surveys

  • Turning lived experiences into meaningful insights


These insights will help shape:

  • Future resources

  • Advocacy efforts

  • Community support initiatives


Because the most impactful work starts with listening.


📣 Partnerships That Strengthen Our Mission


As we grow, partnerships help expand our reach and impact.


We’ve partnered with:

  • iGive

  • PayPal Giving

  • Walmart Spark Good Round Up


Creating more ways for supporters to easily contribute to our mission.


📊 Two Years of Real Impact


In just two years, Not Defined By FND has:



For a nonprofit in a space where awareness is still growing, this is meaningful, measurable progress.


🌟 What’s Next for Not Defined By FND


We’re just getting started.


On April 13 — FND Awareness Day, we will officially launch FND In Focus, our annual video competition.


This national initiative invites patients, supporters, advocates, and creatives to share short, powerful videos that raise awareness and challenge stigma surrounding Functional Neurological Disorder.


📅 Submissions open November 1


Looking ahead, we are also working on:

  • A website redesign to improve navigation and accessibility

  • More free downloads and resources

  • Expanded advocacy initiatives

  • Additional educational videos

  • And so much more!


💛 Be Part of What Comes Next


Over the past two years, we’ve built more than resources.


We’ve built something that didn’t exist.

We’ve built a community. 

A support system. 

A growing movement.


And we’re just getting started.


You can be part of what comes next:

  • Share your story

  • Explore our resources

  • Join a support group

  • Participate in our surveys

  • Partner with us


Together, we can continue raising awareness and ensure that no one faces Functional Neurological Disorder alone.


Not Defined By FND — changing lives, one story at a time, together!



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