I’m a mom. I’m an advocate. I’m a clinical trial researcher. I’m a traumatic brain injury caregiver.
It may have been a fall, an assault, a car accident, a sport, or a random injury; somehow, we have all become a part of this TBI world. We go from doctor to doctor, to a specialists having test after test done with little success. There is no diagnostic test to determine if we have a TBI and there is no standard of care to help us. This is why we continually seek help from the doctors but are never adequately diagnosed and then never given a chance for the best possible recovery. We are left with unanswered questions and having to manage our own care.
Public awareness is increasing about TBIs. Unfortunately, the message being delivered makes us all believe that sports are the number reason someone gets a TBI. This is wrong. Falls are the leading cause of TBIs. And the age groups most affected by falls are young babies, toddlers, and seniors. The CDC (Center for Disease Control) reports that at least 57% of our TBIs are missed indicating we really don’t know the true impact of a traumatic brain injury. This has to stop.
Power of Patients has created a Facebook clinical trial research group to teach people about clinical trials. Our first focus is for people and caregivers with traumatic brain injuries. We have been asked by the National Institute of Neurological Disorders and Stroke (NINDS) to submit information about health and research needs for people with any neurological disorder. We need your input. This is our chance to direct clinical trial research for TBIs for the patient and caregiver.
If you are interested register here: https://powerofpatients.com/newsletter/
We will send you a link to a private survey form.
Thank you for your interest & input!