Special Bones was
created to help raise money for researchers who have
great ideas in developing solutions to help find the
cure for Osteogenesis Imperfecta (OI), but currently
have trouble obtaining and sustaining funds through
the
National Institute of Health (NIH) and other
fund sources.
The main problem with (OI) is bones that break
easily sometimes for no apparent reason, or as a
result of sneezing, coughing or rolling over during
sleep.
Due to the perception that only 20,000 to 50,000
people in the United States have OI, the 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.
We believe a national database for people with
brittle bones will help determine a better
approximation of how many people in the United
States actually have this disease. Our goal is to
put pressure on the medical community to create a
national database so we find out if more than
200,000 people in the US if fact have brittle bones.
If this is the case, then the NIH will be obligated
to provide a significant increase in research
funding.
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?
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!
We Need Numbers:
Due to the perception that only 20,000 to 50,000 people
in the United States have 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 will invest only
$5,000,000 for OI research. 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 One program we feel is really important is to make it standard procedure for
emergency rooms, urgent care centers and doctors’
offices to record individuals who have histories of
multiple fractures. These fractures could be the result
of diseases such as OI, Paget’s disease (which changes
the normal growth process of bones), Rickets (caused by
a Vitamin D or calcium deficiency that leads to
defective bone growth usually among children), or some
other form of bone disease. 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
Testing for OI:
We know of a 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.
This testing costs over $3000. 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
PLEASE DONATE:
Please join us in our efforts to eradicate this
disorder. All proceeds provide funding for research into
the causes, diagnosis, treatment, prevention, and
eventual cure for Osteogenesis Imperfecta. May we count
on your company to contribute to this cause? No donation is too
small.
If you wish to contribute, please send
your donation to:
Special Bones
29401 Osborn Rd.
Bay Village, Ohio 44140
440-871-8129
