OIF E-News - August 2014

In this issue:

2014 OIF National Conference

National Unbreakable Spirit® Walk and Wheel

From the Information Center

OIF Volunteer of the Year

 2014 OIF National Conference, August 1-3 in Indianapolis, Indiana

opening sessionWhat an amazing weekend! The 2014 OIF National Conference took place August 1-3 at the JW Marriott in Indianapolis, IN.  Throughout the weekend, over 35 experienced speakers shared information and led discussions on over 40 topics carefully selected for those interested in Type 1, Adult, Young Adult and Parent information. Over 500 conference attendees took advantage of the one-on-one medical consultations, age and gender specific forums, informative sessions and enjoyable social events!

New and old friends of all ages participated in the National Unbreakable Spirit ®Walk-n-Wheel,  Adult Happy Hour, OIF National Conference Talent Show, Cake and Ice Cream Talent Show After-party, OI Night at the Indianapolis Indians game, Closing Dinner and Dance and more!

At the Closing Dinner, the OI Foundation recognized Dr. Francis Glorieux with the OI Foundation Humanitarian Award for his outstanding commitment to people with osteogenesis imperfecta. The Foundation’s Humanitarian Award is given to individuals who have devoted their own lives to improving the lives of people living with OI. Only two have been awarded in the past, one to Dr. Ed Millar and one to OIF founder, Gemma Geisman. These visionaries have created scientific breakthroughs, affected public policy, improved orthopedic and rehabilitative treatments and mobilized a community to raise awareness about OI.

Mark, Glorieux, Tracy

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. He is the author or editor of many publications including the OIF’s Guide to OI for Pediatricians and a contributor to the latest text book on OI. He is a Principal Investigator for the OIF’s Linked Clinical Research Center program and continues to consult with doctors and researchers all around the world. Dr. Glorieux’s sincere interest in patients and exceptional investigative skills make him a role model for the modern clinician-researcher.

The Osteogenesis Imperfecta Foundation thanks Dr. Glorieux for his leadership and his never ending commitment to children and adults living with OI.

Check out the photos from the 2014 OIF National Conference weekend in the OIF Facebook Photo Album – Celebrate You! OIF National Conference 2014

Thank you for your participation in the OIF National Conference! We look forward to seeing you at the 2016 OIF National Conference in Orlando, Florida at the Walt Disney Swan and Dolphin!


National Unbreakable Spirit® Walk and Wheel

Walk-N-Wheel IndyOn Thursday, July 31st, over 250 members of the OI community came together to kick-off our National Conference weekend with the National Unbreakable Spirit® Walk-n-Wheel for OI!  Beginning at the JW Marriott, participants walked or wheeled one of Indianapolis’ most beautiful landmarks, the Canal Walk of White River State Park.  A local DJ and a clown from Shriners Hospitals for Children got the festivities started before handing the microphone over to OIF Board of Director’s President Mark Birdwhistell and Indianapolis Attorney Greg Fehribach who welcomed participants and – with the help of over a dozen children – cut the ribbon to start the group off on the mile long route.  We would like to thank our sponsors: Health & Hospital Corporation of Marion County; Firestone; Eskenazi Health; Streetscape Co; BSA Life Structures; Shriner’s Hospital for Children Chicago; the Indianapolis Pacers; CSO Architects; the Indianapolis Indians; and John Klipsch Consulting along with the 28 teams that were formed for helping us take Indianapolis by storm and making the Unbreakable Spirit® of the OI community known!

If you would like to hold your own Unbreakable Spirit® Walk-n-Wheel or you are interested in helping us plan our 2016 National Unbreakable Spirit® Walk-n-Wheel in Orlando, please contact Melissa Bonardi at mbonardi@oif.org.


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From the Information Center

Back to School Season- for Parents

Frequent communication with your child’s teacher is an important year-round strategy for helping your child who has OI be a happy and successful student.  The beginning of the school year is especially important for parents to meet new school staff and review information about your child’s physical strengths and needs. Some suggestions from parents regarding how to be proactive about the back to school season are detailed below.   

  • Walk through your child’s planned routes to the playground, auditorium, or restroom to help identify areas that will be difficult for crutches, walkers, or a wheelchair.
  • Decide how you want OI explained to your child’s classmates.
  • Brief the school staff about any changes in your child’s condition over the summer due to surgery or accident.
  • Establish a written policy in regard to handling your child and the use of his/her equipment.  Decide who will be called when a fracture is suspected or your child is in pain. Keep an emergency contact list in an established place for substitute teachers, school nurses and other school personnel. 
  • If your child has an aide, discuss the role the aide should play to ensure the child’s maximum participation in classroom instruction, physical independence, and peer socialization.

If the school staff has any questions about OI or how to develop plans for working with your child, give them contact information for the OI Foundation’s Information and Resource Center (Bonelink@oif.org).


Transition from Pediatric to Adult Medicine- for Young Adults

A pediatric transition team from Nemours Alfred I. duPont Hospital for Children in Delaware recently produced a series of videos titled “Becoming an Adult” for youth and young adults with special health care needs and their families.  The video series covers topics such as self-advocacy, independent living, vocational rehabilitation, and other community-based resources related to transitioning health care needs.  The videos are closed captioned, and can be viewed online and on the YouTube web/mobile phone application.  Click on the links below to view the videos.

What Will I Do After High School

Legal and Financial Planning

Taking More Responsibility for My Health Care

Where Will I Live After High School

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OIF Volunteer of the Year

VOY AwardDo you know a volunteer from the OI community that deserves to be recognized? Nominate them for the OI Foundation’s Volunteer of the Year awardNomination forms must be submitted or postmarked by Monday, September 29, 2014!

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 Osteogenesis Imperfecta Foundation

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