About
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What do you do when you get sick? When faced with illness or discomfort in our bodies, our instinct is to seek help from a doctor. We expect a thorough examination, tests to be ordered, results explained, treatment options discussed, and ultimately, a plan of action put in place. This is the standard procedure we are accustomed to. However, for patients with Functional Neurological Disorder (FND), this is far from the reality they face.
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The journey to receiving a diagnosis of FND is often long and arduous, spanning anywhere from 2 to 10 years (average length of time varies by research). Patients with FND typically endure visits to multiple doctors and specialists, undergo numerous tests, and are repeatedly told that everything appears normal (sometimes even accused of faking symptoms or being told it's "all in their head"), all while struggling to carry out their daily activities. This frustrating cycle is a common experience for those living with FND.
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While recent research has shed some light on FND, many questions remain unanswered. Compounding the issue is the lack of awareness among medical professionals about the latest findings. This ignorance, coupled with the stigma surrounding the disorder, creates a challenging environment for those grappling with FND on a daily basis.
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It is time for a change. Patients with FND deserve better understanding, support, and access to effective treatment. It is imperative that we work towards increasing awareness, educating healthcare providers and the community in general, and advocating for improved care and resources for those living with FND and their supporters.
About Us
Our focus and main goals are in these areas:
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increasing awareness
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research
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treatments
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resources
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support for FND warriors
Click here to watch the "Introduction to Not Defined By FND" videos and learn more about our founder, the inspiration behind our organizations, and our mission and goals.
Our Mission Statement: Not Defined By FND aims to end stigma and bring awareness, advocate for research and treatments, and create conversations to bring needed changes and hope for all FND warriors.
Not Defined By FND is a 501(c)(3) and 509(a)(2) nonprofit organization, and are in the process of obtaining state tax-exempt status. The deductibility of any donations to Not Defined By FND is subject to having its application for tax exemption approved. Thank you for your understanding and patience as we work through this process.
Not Defined By FND is a transformative organization that aims to create change, end stigma, and empower those living with Functional Neurological Disorder (FND). Our mission is to bring awareness, advocate for research and treatments, and initiate conversations that spark needed changes in communities around the world. As fervent supporters of FND warriors, we strive to provide hope and support through our organization. We believe that no one should be defined by their illness, and through education and collaboration, we can make a lasting impact on the lives of those affected by FND.
About This Website
Disclaimer: This website does not provide medical advice. The information contained on this website is for informational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a health care professional with any questions you may have regarding a medical condition or treatment.
This website is intended to provide:
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information about FND
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research regarding FND
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resources for FND
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a safe place to engage with one another (in forums and discussions)
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inspiration and hope for all FND warriors
We strive to maintain the accuracy of information provided on this website. If you notice something that is not correct, please contact us so that we can correct it. If you have something you would like to add, please let us know!
A Message From the Founder
Click here to watch the "Introduction to Not Defined By FND" videos and learn more about our founder, the inspiration behind our organizations, and our mission and goals.
"In addition to my personal struggles, disappointments, and frustrations with doctors and lack of resources, what ultimately drove me to make a bold move to start Not Defined By FND was the realization of the countless individuals facing the same challenges as I am. Every day, we battle to complete simple tasks due to FND, yet we find ourselves without a support system. Doctor's appointments end in disappointment, leaving us unheard and unrecognized. The scarcity of treatments and resources only adds to our frustration, compounded by the stigma associated with FND.
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Through online support groups and and other resources that I have discovered in my obsession to find information about and understand FND, I have connected with incredible individuals worldwide who share my experiences. Finding understanding after feeling misunderstood and dismissed is empowering. However, as these groups continue to grow, it becomes evident that more people are being diagnosed with FND. Yet, where is the research? Where are the accessible treatments and trained medical professionals? While programs like the Mayo Clinic and Cleveland Clinic exist in the US, many of us cannot afford or access them, not to mention the lengthy waiting lists and uncertain effectiveness.
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Realizing and understanding the vast number of individuals living with Functional Neurological Disorder (FND) without access to help, effective treatments, resources, or even basic acknowledgment or understanding is truly eye-opening. This realization served as the driving force behind the establishment of the nonprofit organization Not Defined By FND. Our mission is to champion awareness, research, treatments, and resources for all members of the FND community because we not only need it, but we also deserve it. The time for action is long overdue!
