Due to the perception that only 20,000 to 50,000 people
in the United States have
Osteogenesis Imperfecta
(OI), the
National Institute of Health
(NIH) has labeled OI as
an Orphan Disease. This label means not enough people in
the USA have this disorder to justify a significant
research budget. This year the NIH did increase the
funding for OI research to $8 million. This is still
not enough. To have the Orphan label
removed, at least 200,000 in the USA or 5% of the
world’s population must have this disease. We believe
this is the case.
http://www.nih.gov/news/fundingresearchareas.htm
THE
SPECIAL BONES FOUNDATION BELIEVES
THIS NUMBER IS INACCURATE AND OUR GOAL IS TO PROVE
MORE PEOPLE IN THE USA HAVE THIS DISEASE AND
PRESSURE THE NIH TO PROVIDE MORE FUNDING.
One program we feel
would help us achieve our goal is to make it
standard procedure for emergency rooms, urgent care
centers and doctors’ offices to record individuals
who have histories of multiple fractures with little
trauma. These fractures could be the result of a
bone disease which may have gone undetected. Once recorded, this
individual would become a candidate to receive a simple
test to see if this individual does in fact have some
sort of bone deficiency problem. Contact us for more details
We know of a research program in progress to develop a procedure to
test patients for OI in a timely and cost efficient
manner. Right now when an individual is tested, a skin
graft is taken and sent to Washington for testing. In
most cases it takes eight weeks to receive the results.
Testing can cost over $4,000. This idea will allow
quicker testing (within a week), and the cost will be in
the range of an MRI. This will allow hospitals to order
this test without hesitation and fear of repercussions
from insurance companies. Contact us for more details
TOP TEN HABITS to HEALTHY BONES
By: Colleen Grossner, MS, RD, LD
Vitamin K slows bone loss as it
is needed by your body to make certain bone
proteins, so cook your dark leafy greens and
broccoli in some tasty extra virgin olive oil,
another great source!
HANDLE WITH CARE
By: Jody Picoult
http://www.jodipicoult.com/handle-with-care.html
Handle With Care
explores the knotty tangle of medical ethics and
personal morality. When faced with the reality of a
fetus who will be disabled, at which point should an OB
counsel termination? Should a parent have the right to
make that choice? How disabled is TOO disabled? And as a
parent, how far would you go to take care of someone you
love? Would you alienate the rest of your family? Would
you be willing to lie to your friends, to your spouse,
to a court? And perhaps most difficult of all – would
you admit to yourself that you might not actually be
lying?
PLEASE DONATE:
Please join us in our efforts to eradicate this
disorder.
If you wish to contribute, please send
your donation to:
Special Bones
29401 Osborn Rd.
Bay Village, Ohio 44140
440-871-8129
