Osteogenesis Imperfecta Foundation
 



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In this issue...

Remembering the OIF this Holiday Season
Notes from the OI Foundation
From the OIF Information Center
OIF Good Stuff Sweepstakes - LAST CALL



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Dear Friend,

As we near the end of 2017, we are pleased to present you with an update on our programs and activities as well as thank you for your continued support of the OI Foundation. Because of your generous support, we are able to continue providing programs and services that benefit all members of the OI community. Thank you! If you haven’t had the chance to remember us with a gift at this time of year, please take a minute to visit www.oif.org to make your gift. Thank you for your support; we hope 2018 is a wonderful year for you and your family!

The Board of Directors and Staff of the OI Foundation

P.S. Remember to check if your company matches charitable giving! You can find more information at www.matchinggifts.com/oif


Robin Wright and LeopoldineResearch Grants— The OIF continued funding the research of three young investigators: Dr. Ronit Marom of Baylor College of Medicine, Dr. Kyung-Eun Lim of Indiana University School of Medicine, and Dr. Ivan Duran Jimenez of UCLA David Geffen School of Medicine.

The OI Foundation continued to support, through the Jamie Kendall Fund, a pulmonary study at Hospital for Special Surgery led by Dr. Cathleen Raggio.  This community directed, scientific committee led study is in direct response to the growing concern of pulmonary complications in the OI community, especially in adults.  It will work to determine the inherent cause of restrictive physiology (cardiopulmonary insufficiency) in people with OI so that treatments can be recommended and appropriate measurements for an accurate assessment of the restrictive physiology in OI patients can be defined by creating a standard normative reference for each OI type.


NIH Brittle Bone Disorders Consortium (BBDC) —
Now in its fourth year, the BBDC has made significant progress in achieving its goals. There are now 14 Clinical Research Sites (doubled since 2016) working together to collaborate on exciting new research. To date, the BBDC is involved in seven studies including a pregnancy study, an early stage drug therapy study, a scoliosis study, a biomarkers study, a quality of life study, a dental study, and a craniofacial study. The OIF is working very hard to continue funding this project to ensure this pace of research is maintained.

Additionally, the OIF is funding the research participation of the Hospital for Special Surgery and the Shriners Hospital for Children- Tampa in the Brittle Bone Disorders Consortium (BBDC).


National and Regional Conferences
— The Uniting Unbreakable Spirits Regional Conference Program, an effort to bring information and resources to more members of the OI community, hosted meetings in Houston, Texas; Montreal, Canada; and Seattle, Washington in 2017. In the New Year, the OI Foundation is excited about the 2018 OIF National Conference being held in Baltimore, Maryland in July, as well as a return to the west coast for a 2nd Regional Conference in Los Angeles, California in November 2018.

Click here to read the full update on OIF programs and activities. 


Notes from the OI Foundation

 

Jeanie Coleman Impact Grant Program - Applications Available January 2nd!

Impact Grant applications will become available on January 2, 2018. The Children’s Brittle Bone Foundation and OI Foundation administer Impact Grants to provide direct support to individuals and families with products or services that will greatly improve their quality of life. Items that have been awarded in the past include wheelchairs, orthotics, hearing aids, and modified vans, among many other amazing items. As a reminder, applications will not be available until January 2 and the deadline for submitting applications is February 12. If you have any questions, please email impactgrants@oif.org.

 

bt cover fall 2017Fall 2017 Breakthrough Newsletter

Have you had a chance to read the latest issue of Breakthrough? The recently redesigned newsletter features:

-OIF National Conference
-Good Stuff Sweepstakes
-OI International Scientific Meeting
-an update from OIF CEO Tracy Hart
-OI Clinic Spotlights
-Research Corner
and MORE!

Click here to download this issue of Breakthrough! 



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From the OIF Information Center

 

Tips for Participating in Clinical Research Studies on OI

Supporting research is an important part of the OI Foundation’s mission. Often, the success of clinical studies of a rare disorder like osteogenesis imperfecta depends on getting enough people to participate in the study so the results are meaningful. People who are interested in participating in a clinical trial are encouraged to review the OIF fact sheet “What You Need to Know about Clinical Studies.”

Additional information about the types and phases of clinical research studies can be found on the National Institutes of Health (NIH) website at www.nih.gov/health-information/nih-clinical-research-trials-you/basics. Learn more about research opportunities through the Brittle Bone Disorders Consortium (BBDC) and Contact Registry at this site: https://www.rarediseasesnetwork.org/cms/BBD.  

 

Two New Podcast Episodes Available on Physical Therapy, Protective Handling, and Home Exercise Routines

podcast seriesDr. Frances Baratta-Ziska, Physical Therapy Clinical Supervisor at the Hospital for Special Surgery in New York, joined the OIF on two podcasts to discuss physical therapy strategies in children and adults. Dr. Baratta-Ziska answered questions on a wide range of topics, from strategies to adapt a classroom setting for a child with OI to recommendations on incorporating elements of physical therapy into home exercise programs and daily routines.

To listen to these episodes and any other episodes of the OIF Podcast series, please visit www.oif.org/OIFpodcast.  Additional information about safe-handling and self-care physical therapy and occupational therapy strategies for osteogenesis imperfecta is available in the newly revised OIF publication: Physical and Occupational Therapists- Guide to Treating Osteogenesis Imperfecta. Click here for the PDF version of the guide. If you have any questions or would like a printed copy of the guide, please feel free to contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.

 

Get Connected to the Unbreakable Spirit® Community through Online OI Support Forums

Over the past several years, social media and online networking have increased connections in the Unbreakable Spirit® community. The OI Foundation encourages mutual support and shared experiences through all mediums: in-person support groups, meet-and-greet social mixers, family conferences and online interactive forums. Online forums and social media are often the most convenient way for people living with a rare and complex disorder like OI to connect with others about specific and personal topics. The OI Foundation maintains a list of online OI-related support forums at this link www.oif.org/OnlineOISupport. Whether you are looking to connect with Spanish-speaking OI community members, or about a special topic such as chronic pain, this list may have the forum you are looking for. If you moderate or participate in a group that you would like added to this page, please email Bonelink@oif.org.  Also, keep up with day-to-day activities and announcements through the official OIF Facebook and Twitter Pages! 



Last Chance to Enter! OIF Good Stuff Sweepstakes


Sweepstakes 2017 prizes

Participants of the Good Stuff Sweepstakes have a chance to win one of three amazing prizes:

  1. Make your home a “smart home” with the Amazon Echo and TP-Link Smart Home Starter Kit. The TP-Link Starter Kit includes a light switch, light bulb and outlet. Not only will you be able to schedule when your lights turn on and off from your phone, but you can use your voice to ask Amazon Echo’s Alexa to adjust them for you. Alexa works with TP-Link and several other brands that will allow you to fill your home with products that will keep your house safe, energy proficient and accessible just by talking.
  2. Celebrate the holiday season with a $500 Visa Gift Card. Your Visa Gift Card can be used anywhere that Visa debit and credit cards are accepted.
  3. A Trip for Four to the OI Foundation's Biennial National Conference in Baltimore, Maryland on July 13-15, 2018. The OIF National Conference is the premier educational and social experience for families and individuals living with osteogenesis imperfecta. To learn more about the conference program please click here. Winner will receive four (4) full registrations to the conference as well as a hotel room for two (2) nights at the conference hotel, the Renaissance Baltimore Harborplace Hotel

To enter the OIF Good Stuff Sweepstakes, visit www.oif.org/sweepstakes. All entries must be received by January 12, 2018.

 


 
 
Osteogenesis Imperfecta Foundation

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804 W. Diamond Ave, Suite 210  |  Gaithersburg, MD 20878
Phone: (301) 947-0083  or  (844)-889-7579  |  Fax: (301) 947-0456

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