My Nonprofit Reviews
Review for Chiari & Syringomyelia Foundation (CSF), Staten Island, NY, USA
Having a child with what seems like a very rare malformation is terrifying! Being misdiagnosed for over a decade because doctors, family and the general population have no idea what to look for, or how to test for it, or even what the symptoms are....is infuriating. But how will people know? How will doctors learn and our knowledge and understanding grow if not for organisations like this one getting the word out! The Chiari and Syringomyelia Foundation have featured so many of the 'experts' in this field, and there aren't many. What they are doing for this disease is fantastic, This information needs to be out there, and it needs to be available to the general public. Patients and mothers and caregivers need to be armed with useful and reliable medical knowledge so that they can help doctors diagnose and treat a disorder that is much, much more common than we understand. This is a problem that can be solved, maybe not prevented? But either way, this knowledge is power and it's so very important to me and hundreds of thousands of others.