Special Bones
29401 Osborn Rd
Bay Village, Ohio 44140
OR
Special Bones
Huntington Bank
355 Dover Center
Bay Village, Ohio 44140
OR
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Tax Deductible?
Special Bones is a 501(c)(3) Non-Profit
Tax Exempt Organization.
Please consult your tax advisor about
how to make this an eligible deductible.
The Special Bones Foundation:
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.
All proceeds go to the The Osteogenesis Imperfecta
Foundation, www.oif.org.
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.
This year we are
teaming up with the Osteogenesis Imperfecta
Foundation (OIF) because we both have a common
cause, to find the cure for Brittle Bones Disease.
The OIF is the second largest fund source for OI
research in the United States. Annually, they
provide grants for research in the area of 2.5 to 3
million dollars per fiscal year.
They, as 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 with this database is to find out
if more than 200,000 people in the US have brittle
bones. If this is the case, then the NIH will be
obligated to provide a significant increase in
research funding.
2009 Fund Raiser:
Our 2nd annual fundraiser "A Night of Rock-N-Roll"
featuring
The Paul Green School of Rock Musicwas a great
success. We had over 300 people in attendance and gave
out 135 prizes worth more than $10,000.
We will be posting
pictures from this event as soon as we get them all
together. Special thanks the The Paul Green School of
Rock music on a wonderful show. The kids were fabulous
and they had the place hopping with all their rock and
roll renditions. We also had a treat with the The
Grad School adult band playing for us. All in all, it
was a great time had by all.
Special thanks to Pete and
Kathy Wiemer of We Wan Chu Cottages for offering the
Grand Prize of a three day weekend at their Country
Chalets.
Mailing Address:
We Wan Chu Cottages
P.O. Box 253
Chautauqua, New York 14722
Street
Address: 4434
West Lake Road
Mayville, New York 14757
Map-It
Books to Read: 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!
Stem Cell Treatment for Brittle Bones
In The Womb:
ScienceDaily (Jan. 30, 2008)
— The extraordinary results of an in utero stem cell
treatment could lead to a new treatment for babies with
brittle bones, as well as a range of other disabling
conditions, according to a maternal-fetal medicine
researcher, now based at The University of Queensland (UQ). Continue reading
Stem Cell Treatment for Brittle Bones in the Womb >>
Gene Therapy:
Today,
this project is gaining
momentum as Dr. David Russell has been successful with
animals and is hopeful testing on humans will begin soon.
Continue reading
Gene Therapy 2007 >> Back in
2004,
Dr. David Russell, MD,
PhD, Professor of Medicine and Biochemistry at the
University of Washington School of Medicine in Seattle
wrote an article about Gene Therapy in which an
individuals collagen may be altered through stem cell
technology.
At that time, testing was
limited to animals. Continue reading
Gene Therapy 2004 >>
Injectable Bone: British researchers have developed A
material that can be squirted into broken bones, where
it hardens within minutes, has been developed by UK
scientists. The toothpaste-like substance forms a
biodegradable scaffold over which the body's own bone
grows. Continue reading
'Injectable bone' helps fractures >>
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
