Help us find the cure for
OSTEOGENESIS
IMPERFECTA

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Special Bones
29401 Osborn Rd
Bay Village, Ohio 44140

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Special Bones
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355 Dover Center
Bay Village, Ohio 44140

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In the NEWS:

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New Gene Discovered..01/2010   Gene Therapy ..2007
MySpace..01/2010   Vitamin D ..2006
Genetic Mutation ..8/2009   Types of OI ..2006
Injectable Bone ..12/2008   Brave New Cells ..2005
Stem Cell Treatment ..01/2008   Gene Targeting ..2004
  Gene Therapy ..2004

Special Bones:

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.

Continue reading Osteogenesis Imperfecta Information >>


Interesting Reading:

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

  1. 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!

Continue reading Top Ten Habits to Healthy Bones >>


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

Thank you for your support!!!

Thank you,
Mark Wagner - Co-Founder of Special Bones
markwagner@specialbones.org

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 Updated 05/07/2010

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