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SPECIAL BONES - 206 Reasons to Care

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Special Bones supports the following organizations and their cause..
There is hope!!!

Retweeted OIFE (@OIFE_OI): 02/16/2018

BAD NEWS FROM THE US
The Osteogenesis Imperfecta Foundation (US) is a member of the umbrella organization NORD.... https://t.co/XJkmEw7OLv

https://www.classy.org/event/pals-in-motion/e164704
Doing this for my nephew David Fisher. I'm told it will be the best day of the year.

CLASSY.ORG
Pals in Motion
We're addressing an important issue that affects many people and their...

https://prayersfrommaria.org/#1

PRAYERSROMMARIA.ORG
Home - Prayers for Maria Children's Glioma Cancer Foundation

https://www.sleephelp.org/autism-asd/

SLEEPHELP.ORG
Sleep Help for Those Diagnosed With Autism Spectrum Disorder (ASD)

https://www.kulturecity.org/

KULTURECITY.ORG
We rethink accessibility to create acceptance and
inclusion for all individuals with unique abilities.
See our impact rethinking accessibility to create
acceptance and inclusion 650 million people

SLEEPHELP.ORG
Sleep Help for Those Diagnosed With Autism Spectrum Disorder (ASD)

Unbroken: One Family’s Resilience in the Face of Brittle Bone Disease An up-close look at a lifetime of broken bones across generations 06/2015

MedSciNet Powers Unique Stem Cell Brittle-Bone Study 10/2015

First 'in womb' stem cell trial to begin 10/2015

Study in Mice Links Key Signaling Molecule to Underlying Cause of Osteogenesis Imperfecta - 09/2014

New drug gives growth to girl born with no bones - 04/2013

Fighting diseases with genetic therapy - 09/2012

Mutations in PPIB (cyclophilin B) delay type I procollagen chain association and result in perinatal lethal to moderate osteogenesis imperfecta phenotype - 2011

Gene targeting of mutant COL1A2 alleles in mesenchymal stem cells from individuals with osteogenesis imperfecta - 01/2008

Other Articles

Special Bones:

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. For fiscal year 2013, the NIH did increase the funding for OI research to $9 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://report.nih.gov/categorical_spending.aspx

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

Continue reading Osteogenesis Imperfecta Information >>

Interesting Reading:

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!

Continue reading Top Ten Habits to Healthy Bones >>

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?

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