ARE YOU SICK AND TIRED OF BEING SICK AND TIRED? We, as a GLOBAL CHIARIAN COMMUNITY, need to ASK for change
otherwise we will get what we've always got ... Little understanding in and out
of the medical community ... Which translates, at times, to out-dated care, or
at the very worst, wrong care or no care at all! Currently there are no real numbers of how many people are
currently afflicted with Chiari, Syringomyelia, etc. Each group (medical, government, etc) we
spoke with wanted to know the current count for which we had no concrete
answers. Numbers of afflicted help them to determine NEED.
Chiarians Unite is creating a database of Chiarians,
Syringomyelians, etc. to prove the need for change. With this
information, we intend on involving the National Institutes of Health (NIH),
National Organization for Rare Disorders (NORD), and other officials who can
aid us in our desire to create change and understanding regarding Chiari, Syringomyelia,
Hereditary Disorders of the Connective Tissue, Pseudotumor Cerebri, etc.
We need to request further understanding in the area of Chiari
and Related Disorders. Neurologists,
neurosurgeons, radiologists, radiologist's tech support, nurses, PCPs,
pediatricians, optometrists, ophthalmologists, the list goes on and on, need to
seek out new information regarding: new understanding about Chiari; the length and width of
Chiari redefined; the importance of correct diagnosis; myriad of other related
conditions; new
surgical techniques; etc.
Chiarians Unite is also preparing a proposal to seek cooperation, and then
sponsorship, for a Chiari and Related Conditions Medical Conference here in
Ohio. Please share this form
with others you know are afflicted.
By filling out this form, I give Chiarians Unite permission to
use the information herein to: help secure a Chiari and Related Disorders
Medical Conference within the State of Ohio; gather a count of afflicted to be
used in awareness regarding the disorders contained within Chiarians Unite
site; and secure a relationship with others* who can aid in research and
education.
PLEASE fill out this form for each family member afflicted. All areas are required - Thank you for your
assistance!
Again, thank you so much for your help and support!
Chiarians Unite Staff
*NOTE: Information may be
shared with NIH (National Institutes of Health), NORD (National Organization
for Rare Disorders), government entities, medical providers within the United States and foreign countries, etc. in order to show relevance/need
in this area.
