OIF E-News - October 2014

In this issue:

NIH Research Grant

OIF Calendar Highlights

From the Information Center

From the OI Foundation


NIH Research Grant



The OI Foundation is now part of a team receiving a $6.25 million research grant from the National Institutes of Health!

LeeBaylor College of Medicine has been selected by the National Institutes of Health to lead the Brittle Bone Disorders Rare Disease Clinical Research Consortium, a new, multi –center initiative that will focus on understanding and providing better treatment options for rare diseases characterized by bone fragility and fractures. The consortium will team up with the OIF to train a broad spectrum of health care providers in the diagnosis and treatment of OI. OIF Medical Advisory Council Member Dr. Brendan Lee will serve as the principal investigator of the consortium.  Check out the full press release for details about this groundbreaking collaboration! 


A Cross-Sectional Multicenter Study of Osteogenesis Imperfecta in North America- Results from the Linked Clinical Research Centers (Published in Clinical Genetics, 2014)

This is the first major article to come out of the OI Foundation’s Linked Clinical Research Centers project. It reports on basic information arising from the initial stage of the Natural History Study. A natural history study like this gathers information about the health of people who have OI. The study involved people across the entire life span who represented the different degrees of severity - mild, moderate and severe. Based on this data, the article describes some of the long term skeletal and non-skeletal effects of OI. This information helps to identify and prioritize the next set of research questions, identify potential areas for improving treatment and expands understanding about how OI changes across the life span.

The Linked Clinical Research Center project was funded by, and would not have been possible without the generous support of the Children's Brittle Bone Foundation. The OI Foundation continues to partner with CBBF in many important endeavors, like the Impact Grant program.
Check out the full article.


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OIF Calendar Highlights

Fine Wines signMark your calendars for February 28th!

The OI Foundation’s Fine Wines Strong Bones event is returning to the Gaylord Resort at the National Harbor to celebrate its 15th anniversary!  Join us for a fun-filled evening of silent and live auctions, a casino with blackjack, craps, roulette and poker, delicious food and wines from around the world.  Money raised at this annual event helps the OI Foundation to continue our mission to support the nearly 50,000 people in the United States living with osteogenesis imperfecta.  Visit www.oif.org/FineWines for more information and to purchase your tickets today!


Enter the OIF Good Stuff Sweepstakes!

Enter the OI Foundation’s annual sweepstakes for your chance to win!
Prizes include: a 7-Inch Dual Screen Portable DVD Player, valued at $200; a 42” LED TV with HDMI cable, valued at $400; and a trip for four to the 2016 OIF National Conference complete with four full conference registrations and a room at the Walt Disney World Swan & Dolphin for three nights, valued at $1200.  Act soon because entries received before December 8th will be eligible for the early bird prize of a $200 gift card to Amazon!  The suggested donation is $5 per entry ticket, but there is no purchase necessary to win.  For complete rules click here! Good luck!!


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From the Information Center

Staying Well- Virus Prevention

Headlines this autumn frequently mention enterovirus, ebola and flu.   For all of these conditions the general health and safety reminders are the same: wash your hands, stay away from sick/coughing people, do not share eating utensils or cups, do not touch eyes, nose or mouth with unwashed hands and stay home if you are not feeling well. 

Enterovirus D68 is related to the common cold. The problem with this strain of virus is that it quickly causes serious problems breathing. Immediate medical attention is needed if a child with a “cold” starts wheezing or is short of breath. 

As we head into flu season, it is important to remember other ways to protect yourself from viruses.  Flu season in the United States can begin as early as October and last as late as May. Protection from the flu needs to be upgraded with the new shot every year.  Flu is a respiratory disease and can lead to serious illness in people who have a chronic health condition like OI. People who have OI and have asthma, who are short in stature, or who have any difficulty breathing are especially at risk. So don’t delay. The CDC recommends that everyone 6 months of age and older should get a flu vaccine every season. If you have an allergy to eggs or if you have any question, be sure to talk to your doctor. 


 For Students- Apply for the AAHD Frederick J. Krause Scholarship on Health and Disability

If you are a student living with OI and interested in pursuing higher education in a field related to disability and health, be sure to apply for the American Association on Health and Disability’s Frederick J. Krause Scholarship.  The deadline for submission is Saturday, November 15th.  Please visit the AAHD website at www.aahd.us/scholarship to download the application.

Upcoming Activities that May Be Local to You

There may be some fun upcoming opportunities to connect with your local OI community.  Please circulate these meetings and events throughout your networks. 

 23rd Annual New Jersey Beefsteak Dinner

Garfield, New Jersey- Saturday, October 18th


Virginia Beach OI Support Group Meeting

Virginia Beach, Virginia- Sunday, October 19th


Tampa OI Support Group Meeting and Halloween Party

Tampa, Florida- Saturday, October 25th


Just One of the Kids Seminar at Suburban Hospital

Bethesda, Maryland- Thursday, November 6th


40th Annual SCPICA Golf & Tennis Tournament

City of Industry, California- Friday, November 7th


Tennessee OI Support Group Meeting

Nashville, Tennessee- Saturday, November 22nd


See the OIF website calendar for more details



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From the OIF

Congratulations, Dr. Glorieux!

Glorieux awardsLast month, Dr. Francis Glorieux was awarded the William F. Neuman Award at The American Society for Bone and Mineral Research (ASBMR) annual meeting. The William F. Neuman Award is the ASBMR's oldest and most prestigious award. It recognizes an ASBMR member for outstanding and major scientific contributions in the area of bone and mineral research and for contributions to associates and trainees in teaching, research, and administration.

At the 2014 OIF National Conference, Dr. Glorieux was awarded the OI Foundation Humanitarian Award for his outstanding commitment to people with osteogenesis imperfecta. Dr. Glorieux, Chairman of the OIF’s Medical Advisory Council, is currently an Emeritus Professor at McGill University. Among many accomplishments, Dr. Glorieux developed a model center using a multidisciplinary approach to treating OI; trained physicians from all around the world; and built a career that combined patient care and research.


Volunteer of the Year - Last Call! 

Know someone who deserves to be named Volunteer of the Year for their dedication to the OI Foundation? Let us know! We are so thankful for each and every volunteer and participant who provide us the support we need to help improve the lives of those living with OI. Volunteer of the Year is an award designed to recognize those who truly go above and beyond. Help us recognize these outstanding citizens by nominating a volunteer who deserves some gratitude.

Please submit OIF Volunteer of the Year Nomination Forms to Danielle Cymber at dcymber@oif.org by FRIDAY, OCTOBER 17, 2014!



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NEW! OI Unbreakable Spirit Snowflakes

Available for ordering from the OIF Online Store

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 Osteogenesis Imperfecta Foundation

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