The Neurosensory & Neuroregenerative Research Foundation (NNRF) is a collective effort comprised of medical professionals, sufferers, and other interested parties, campaigning for research, treatment, and ultimately a cure for two prevalent, yet highly neglected, medical conditions known as Hallucinogen Persisting Perception Disorder (HPPD) and Visual Snow Disorder (VS).
The core objective of the organization is the relentless pursuit in ascertaining the underlying root cause/causes for these medical anomalies, as well as establishing bona fide clinical treatment solutions through substantive and focused medical research.
Our secondary, yet equally important objective is to raise awareness and garner support and understanding within the medical establishment, as well as from families and friends who have loved one suffering from Hallucinogen Persistent Perception Disorder or Visual Snow Syndrome.
The Foundation’s Origin
The motivation behind the inception of the foundation was the initiative of an individual sufferer who was driven by the extreme lack of medical knowledge, and inadequate treatment for the extremely deleterious effects that these two conditions have on quality of life of the afflicted.
The fact of the matter is that physicians by and large are completely unaware of what these conditions are, how to diagnose them, and managing the rehabilitation and treatment of an individual who has contracted Visual Snow or Hallucinogen Persisting Perception Disorder. The result of the medical fields’ unfamiliarity with these conditions typically yields misdiagnosis and with that, are prescribed medications which often do considerably more harm than good. This can lead to worsening of symptoms and on occasion, tragic outcomes.
It is due to a desire for change, a relentless pursuit for awareness and treatment that the foundation was started. The organization serves to link the medical community to the community of sufferers in order to achieve the organizations goals. The desire to target both HPPD and VS is due to their similarity. While they are markedly different in the broader sense, they share many overlapping symptoms and possible neurological underpinnings. It is our mission to do whatever is required to understand the root cause of these conditions, and provide a severely neglected community with much needed help and relief. We ask not for your sympathy, but for your understanding, your support, and your help in order to find a cure, or at the very least adequate treatment. The difficulty with these disorders, is that the suffering is not visible to the outside world, but to the sufferers, the daily struggle of altered perceptions is their unmistakable reality.
In an effort to improve expectations at the physician’s office for both patient and practitioner, advocacy campaigns would be tailored primarily to parents, educators, emergency room personnel, psychiatrists and psychologists who are typically the first to encounter individuals that suffer from neurosensory dysfunction. Through advocacy and awareness countless lives can be saved and through proper treatment by physicians who are empowered with the knowledge in identifying the telltale signs of VS and HPPD quality of life can be preserved with the hope that through research a can a cure be found.