And what better place to hold this event than the famous
"Cleveland
Agora" in the heart of Cleveland, the Rock and Roll
capital of the world.
Please come back and visit our website for more details
when they become available...
MISSION STATEMENT for The Special Bones Foundation
Special Bones is an organization
created in the Cleveland, Ohio area 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.
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. 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
We have targeted researchers whose ideas, when combined,
will hopefully convince the NIH that more people
in the USA have OI that previously thought.
One program would 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.
Another program in progress is 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 $2500. 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.
Another project is targeting Gene Therapy in which an
individuals collagen may be altered through stem cell
technology. This project is not far off from being
reality. It just needs continued funding to be
successful. So far, some test results using animals are
showing complete elimination of the Osteogenesis
Imperfecta mutation.
$5,200
worth of Gas for 1 year
Congratulations to this years
"Cure for Brittle Bones Raffle Winner "
